Download kidney health: delivering excellence

KIDNEY HEALTH: DELIVERING EXCELLENCE
A Kidney Health Report
October 2013
KIDNEY
H E A LT H
KIDNEY
H E A LT H
CONTENTS
Foreword
3
Introduction
4
Executive Summary
6
Summary of ambitions
10
Ambitions
12
Appendix 1 How the report was created
44
Appendix 2 Acknowledgements
45
Appendix 3 Glossary and Abbreviations
46
Appendix 4 References
48
FOREWORD
The renal community has a distinguished record of ‘firsts’ in UK medical practice. When dialysis
system. The renal community has continued to play a lead role in the development of
became established as a long-term treatment for kidney failure in the 1960s relatively few
appropriate end of life care in the NHS.
centres were established in the UK compared to mainland Europe. As a result, self-care ‘home
dialysis’ became the most common treatment modality. New ways of working quickly evolved,
and the multi-professional team was born. In a Witness Seminar at the Wellcome Trust in 2008,
Dr W R (Bill) Cattell commented: “Dialysis, especially in the home, changed the face of British
medicine. It introduced the nurse specialist, team work, informality between staff, nurses and
doctors and gave patients the chance to have their say. This was a huge change in the manner
in which healthcare was delivered in this country’.
During the 1980s public-private partnerships finally led to an expansion of dialysis facilities
up to European levels. This trend continued under Labour from 1997, but the commissioning
of renal services remained haphazard. The introduction of National Service Frameworks (NSFs)
This new document builds on the NSF and what has been achieved in the last ten years.
It projects this experience to identify the challenges ahead. While there are many similarities
with past issues, the world is undoubtedly much different as are the hopes and expectations
of patients with kidney disease. In this document the renal community has drawn on the
maturity and strength gained from former successes to articulate its aspirations for the future and
provide the framework for a clear long-term strategy to meet the needs of kidney patients.
Dr Roger Greenwood
Consultant Nephrologist, the Lister Hospital, Stevenage
External Reference Group, Renal National Service Framework
provided strategic direction for important areas of medicine. However, the renal service was
‘low priority’ until Austin Donohoe, a patient who was Chair of the National Kidney Foundation,
initiated a coordinated effort by the whole renal community that eventually led to publication
the Renal NSF in 2004 and 2005. Patient influence - another ‘first’ for the renal community.
The Renal NSF provided a solid foundation of principles from which the renal community could
advocate for improved services. It stressed the importance of patient-centredness in decisionmaking and detailed the infrastructures required for a successful service. Uniquely among medical specialties outside cancer, the NSF recognised that coordinated structured support systems
for renal patients approaching the end of their lives were necessary in a modern healthcare
3
INTRODUCTORY COMMENTS
Despite obvious improvements in the management of people with chronic kidney disease (CKD)
accumulated over many years. We must never to get to the point where non-experts are
in primary care since the Renal National Service Framework and the introduction of CKD to
deciding our fate with no knowledge of the complex nature of kidney disease and its treatment.
the Quality and Outcomes Framework, this document identifies significant inequalities in the
The National Service Framework for Renal Services is reaching the end of its lifespan. Kidney
identification of people with CKD and therefore the management of their condition.
Health: Delivering Excellence describes the ambitions for our future care, a future in which the
The Royal College of General Practitioners is committed to improve the care of people with
CKD. Over the next three years kidney care is one of its clinical priorities with a designated
Clinical Champion. The next three years will also see a National Audit and Quality Improvement
Programme for CKD in primary care.
As Clinical Champion I see this as an opportunity to work with the UK kidney community to
drive forwards the ambitions of this document to develop excellent care for people with CKD
in general practice.
Kathryn E Griffith
BM BS MSc FRCP MRCGP
RCGP Clinical Champion for Kidney Care
kidney patient community must play a central role. Strategic documents like this will always
draw debate and what happens after its publication will be telling. It will be up to the patient
community to take ownership and seek commitment from clinicians, professional bodies and
policymakers to make and sustain the improvements in our healthcare that are needed.
For me the ambitions described within this document reflect all parts of my care, past, present
and future, and while like many of you I want greater awareness of kidney disease among
the general public, my personal favourites are “Self-management” and “Lifestyle on dialysis”.
Intrinsic to both is patient education. Access to information helps us to take control, share in
decision-making and allay our fears. We need knowledge to question, challenge, seek help and
help ourselves - this is the power we must use to insist that standards are raised in order to
realise our ambitions for the whole kidney pathway.
As a kidney patient I feel privileged to have played a part in developing this strategic document.
This document shows the way forward for us all.
There are many individuals within the renal community with the experience that only being a
Nicholas Palmer
patient with a long term condition can bring, perhaps described as ‘expert patients’ or ‘patient
Head of Advocacy NKF National Kidney Federation
champions’, who have also contributed. I hope we have helped shape a document for all people
Kidney Patient: Guys and St Thomas’ Kidney Patient Association
with kidney disease, their carers, family and friends, which we can use to demand better care.
Much of this care is provided by specialists with expert knowledge of kidney disease
4
INTRODUCTORY COMMENTS continued
It is sobering to reflect that when my career in kidney
medicine began there was scant interest from our
professional association in addressing the shortfalls in
service provision and service delivery for people with
kidney disease in the United Kingdom. Although these
deficiencies were highlighted through publications in the
medical literature by concerned nephrologists it has only
really been in the last 15 years that the whole nephrology
community has gradually become involved in driving up
the quality, quantity and accessibility of services for people
with kidney disease.
pathways of care for people with kidney disease.
Nevertheless we still have a long way to go before we
can be comfortable that we’ve come to the end of the
journey and we need to be very careful that we do not go
backwards. Concerns about use of a threshold measure of
kidney function leading to possible over-diagnosis need
to be tempered with the knowledge that the five-year
survival of chronic kidney disease is worse than that of
some common cancers. The progress that has been made,
in particular with better diagnosis of chronic kidney
disease and access to transplantation, should not be
We have come a long way since the first part of the NSF
compromised. It is perhaps fitting that once again the
was published in January 2004, under the stewardship of
catalyst for the next stage in this journey is a patient,
the first National Clinical Director for Kidney Care, Donal
Fiona Loud. My challenge then to our UK kidney
O’Donoghue. For the first time we began to talk about
community, to our colleagues in primary care and to our
patient-centred services and set clear standards for
policymakers is to step forward, be counted and stand
delivery of care. Patient choice became the watchword
with Fiona to provide the professional knowledge and
and quality of care a key driver. We have seen substantial
leadership to ensure that we complete the journey and do
improvements in the identification of kidney disease in
not create unnecessary obstacles for ourselves on the way.
general practice, and a reduction in late referral to renal
Dr Paul Stevens
services. The incident rates of end-stage renal disease
Consultant Nephrologist, Kent and Canterbury
have plateaued, the numbers being transplanted have
Hospital.
progressively risen, and the national disgrace which is
acute kidney injury is being addressed. We have national
professional standards and guidelines and clearly defined
5
EXECUTIVE SUMMARY
Every day 19 people in the UK will develop kidney failure. Four of them will not have been
Kidney Health: Delivering Excellence gives a voice to the ambitions of all those who understand
known to specialist services for sufficient time to prepare for their treatment. They will be on
and care about kidney services. It offers a view of kidney care from the whole kidney
average 65 years old if they are white, or 58 if they are black or South Asian. After 90 days
community, which means people affected by kidney disease and their families and carers as
one of them will have died, two will have had a transplant, and the remaining 16 will be
well as the many different groups of healthcare professionals who support and treat them.
receiving dialysis treatment at a cost of over £25,000 per year. Many of these people will
For people and their families, we describe what they should expect from their service, and for
be elderly, and some will be young. For all of them, and their families, their quality of life
healthcare professionals what they should be providing. But this report must do more than
will be severely diminished. Their access to treatment, the education they receive, and their
reflect hopes and aspirations. It has the strong support of the patient and professional bodies
opportunities to become an active partner in their care, will all vary according to where they live.
that serve the needs of people with kidney disease, and should be a force for change, challenging
This can and should be improved.
policymakers in Parliament and the Department of Health to create a framework for the delivery
Behind these 19 people are many more who will probably never have to tread this path of
dialysis and transplantation, but have a lesser degree of kidney dysfunction that we call chronic
kidney disease. The terminology has been controversial, but the fact that they have kidney
damage or impairment means they are at increased risk of cardiovascular disease and acute
kidney injury. Some will experience a progressive loss of kidney function. They need to know
they are at risk so that this risk can be reduced.
Kidney Health: Delivering Excellence is for all these people, those with some element of kidney
dysfunction and those whose kidneys have failed. It looks at the opportunities we have to
prevent and treat kidney disease, to improve the quality of life for people with kidney failure,
and to encourage those who are able to take an active part in their own care.
of kidney care that meets our ambitions.
We do not presume to propose solutions. Our ambitions are independent of future changes
in the structure of the NHS, whilst the solutions may not be. Our report sets the benchmark
against which developments in NHS policy, structure, planning and operations can be measured
by the kidney community. It must also be used by our community to justify and stimulate new
initiatives to address the shortfalls we have identified.
The report walks us through the entire kidney care pathway, from awareness of kidney
disease and early identification through to monitoring and treatment, including selfmanagement, transplantation, dialysis and end of life care. The roles of nurses and allied
The National Service Framework has done a great deal to shape services for kidney patients,
healthcare professionals are highlighted, as are the needs of children and young people affected
but has now almost run its course. The healthcare landscape may have changed, but the
by kidney disease and those who require highly specialised care. Within the report are important
fundamental needs of patients have not. The ambitions of kidney patients and professionals
messages for professionals who care for people with kidney disease in all settings, but a number
need articulating once more, in the light of what we have achieved in the last ten years and
of central themes run through its narrative.
what we have not.
6
1. Perceptions of kidney disease
It is vital that we increase awareness and understanding at all levels. Greater public and professional
awareness will prevent some people developing kidney disease and improve the identification and
treatment of those that do. Raising the profile of kidney disease and encouraging people without kidney
conditions to talk about transplantation will help us to build on the progress of the last five years in this
area.
We need to work more closely with professionals outside our field. Treating the cardiovascular diseases
as a single family is a laudable aim, but one which must increase the visibility of kidney disease and not
lead to a loss of identity. Educating our colleagues working in diabetes and primary care will help to avoid
the unplanned starts on dialysis due to late referral that are so harmful. It has been argued by some that
too many people are being labelled with a diagnosis of chronic kidney disease. We must counter this and
explain that chronic kidney disease is an important risk factor for cardiovascular disease, acute kidney
injury and poor prescribing.
2. Living with a long-term condition
The need for information is greatest in people who are affected by kidney disease. Patients need to
understand their kidney condition, and how this relates to other medical problems they might have, in
order to make the choices that are needed to live well with these conditions. People with kidney disease
must be offered the help and support they need to manage their own conditions as much as they choose
to. Care should be planned with patients, reflecting their choices to help them to live the best life they can.
The professional community has perhaps been too slow to appreciate the importance of quality of life in
kidney patients, and how lifestyle is inextricably and uniquely linked to treatment choice in patients with
advanced kidney disease. We know how effectively the kidney patient and professional communities can
work with one another, and together we now have the opportunity to address these deficiencies.
7
3. Inequality in kidney disease
Inequality is a critical factor throughout the kidney care pathway.
4. Safety in kidney disease
Kidney disease
Healthcare systems must provide care that is safe, but people with kidney disease are at
disproportionately affects certain groups in the population, who in turn may have poorer access
increased risk of avoidable harm. Acute kidney injury is a barometer for the quality of care, and
to treatment. Black and South Asian groups in particular have high rates of advanced
probably the most important safety issue in the NHS, accounting in 2011 for 200 times more
kidney disease but wait considerably longer for transplants. Nearly one-quarter of people on the
deaths than infection with methicillin-resistant staphylococcus aureus (MRSA). People who are
transplant waiting list are from black and minority ethnic backgrounds, but only 3% of those
at risk of acute kidney injury, particularly those with chronic kidney disease, should know they
on the Organ Donor Register are from these same groups. Health policy, health promotion,
are at risk. Better information and education will help patients and healthcare professionals
research, improvement initiatives and care for individual patients must consider the specific
to reduce this risk. Accurate diagnosis of chronic kidney disease and communication of the
needs of these populations in the context of their culture and religion.
diagnosis to patients are therefore needed. Established acute kidney injury must be treated
People from socially deprived backgrounds also experience higher rates of kidney disease, but
are less likely to receive the best treatment. The factors underlying these relationships are
complex, but will not be understood and addressed without action at all levels, from
government, public health and the media, through to patient and professional groups, and the
staff who work in health and social care.
The care that people with kidney disease receive too often depends on where they live. It
is unnecessary and avoidable that the length of time taken to be placed on the transplant
waiting list, the time taken to prepare for living kidney donation, and the availability of
treatment choices such as home haemodialysis and peritoneal dialysis, are so different between
promptly with access to dedicated renal support available whenever it is needed, with the
infrastructure and protocols in place to support safe and timely transfers to the right care
environment.
Patients with kidney disease are also at greater risk of other adverse consequences of care. As
renal function declines the risks to patient safety increase. Kidney patients are vulnerable to
avoidable harm due to prescribing errors, inadequacies in infection control practices, dialysis
catheter-related related bloodstream infections, and late referral for renal replacement.
Improving patient safety in kidney disease therefore needs to be a priority for our health service.
units. Reducing this variation has the potential to save both lives and money.
8
5. The costs of care
We must resist in the strongest possible terms any attempts to move the management of
patients with end-stage renal disease away from specialist care. It is not possible to provide
high quality services which are equipped to meet future changes in demand without the
5. The need for better evidence
Research is the basis for the understanding of disease and the improvement of healthcare. The
funding to support both capital investment and a skilled multi-professional workforce, staffed
at the levels required for safe and compassionate care.
kidney community has a strong tradition of research activity, and yet we currently lack a good
However, achievement against many of our ambitions should be accompanied by costs that are
evidence base for many of the conditions we treat, and where the evidence does exist we are
reduced rather than increased. Delaying or preventing end-stage renal disease in even small
unsure how to apply it consistently. The need for better evidence on how to improve outcomes in
numbers of patients will recoup the costs of implementing guidelines for the management of
chronic kidney disease is an important factor contributing to under-diagnosis in primary care. We
chronic kidney disease. The costs of informing, educating and empowering patients should
can all agree that self-management is kidney disease must be beneficial, but more information
be more than offset by improvements in health status and quality of life and a reduction in
on the best way to help patients take control is required. We are beginning to appreciate the
avoidable harm. The economic case for increasing transplantation is clear. Acute kidney injury
significance of quality of life in kidney disease, but how can we measure and improve it? How
affects up to one in five emergency hospital admissions, and preventing unnecessary episodes
do we support patients to make treatment choices? What should we do to increase the numbers
could save the health service up to £185 million per year. The cost to the NHS of providing
of living and deceased donors? How do we spread best practice in the prevention and
care for kidney disease is undoubtedly high, but delivering care that is better, safer and more
treatment of acute kidney injury?
patient-focused does not have to be more expensive.
These questions and more should form the basis of a formal research strategy for our
We have witnessed many improvements over the last ten years, but have a considerable way yet
community. This in turn will further our understanding of the mechanisms of disease, provide
to travel before care for people with kidney disease is as good as it could and should be. The
better evidence on preventing, delaying and treating kidney disease, inform us how best to
progress that has been made in some areas, for example in better identification and referral to
empower and work with patients, and improve the outcomes and experience of care.
renal services, has levelled off. Care across the entire pathway is inconsistent and sometimes
unjust. Healthcare professionals are only beginning to appreciate patient care in a broader
lifestyle context. Kidney Health: Delivering Excellence describes the challenge for the next ten
years and beyond. Now we all need to rise to it.
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SUMMARY OF AMBITIONS
1.
2.
Awareness: People - both healthcare professionals and the general public
6.
- understand the factors that increase the risk of kidney disease, and
or moving from one type of treatment for end-stage renal disease to
action is taken to reduce these risks.
another, understand and are given sufficient time and support to prepare
for a treatment that is suitable for them, chosen from the full range of
Identification: All people with kidney disease are correctly identified and
options.
monitored.
3.
4.
5.
Preparation and Choice: All people approaching end-stage renal disease,
Self-management: All people with kidney disease are offered as much
7.
Equity in Transplantation: Listing for transplantation is based solely
information as they would like in order to understand and manage their
on clinical need and suitability, and is not influenced by ethnicity,
condition.
socio-economic status, or where the potential transplant recipient lives.
Person-centred care: Care is centred on the person, taking into account
8.
Increasing Transplantation: The number of transplants, from both living
individual needs and preferences, quality of life, symptom burden and
and deceased donors, is increased such that all people likely to benefit
the presence of co-existing medical conditions.
from a transplant have the opportunity to receive one.
Acute Kidney Injury: Avoidable harm related to acute kidney injury is
prevented in all care settings.
9.
Living well with a transplant: A person who receives a transplant is
enabled to manage their transplant and is supported to achieve the
greatest possible benefit from it.
10
10. Dialysis as a specialised service: Dialysis care (including preparation for
14. Expert care in rare kidney diseases and in pregnancy: All people with
dialysis) continues to be commissioned as a specialised service, and is
rare diseases affecting the kidney, and women with chronic kidney
delivered by renal units with the capacity and workforce necessary for all
disease who are contemplating pregnancy, have unrestricted access to
patients to receive high quality dialysis using their chosen method.
expert advice and care wherever they live and whenever it is needed.
11. Lifestyle on dialysis: People receive all of the information and education
15. Research: A research strategy for kidney disease is developed, supported
they require to engage fully in the planning and delivery of their dialysis,
by the funding required to design and conduct high quality studies, and
and are supported to minimise the detrimental impact of treatment on
used to further understanding of the mechanisms of disease and improve
their lifestyle and to self-care if they wish.
healthcare quality and outcomes.
12. Care for children and young people: All children and young people with
16. Conservative care: All people who opt for conservative non-dialytic
chronic kidney disease have unrestricted access to a service specifically
management of their kidney disease or choose to discontinue dialysis
designed to meet their needs.
treatment are supported by a multi-professional team working
13. Allied Services: All people with kidney disease know about, and have access to, a specialist multi-professional team.
closely together to ensure a smooth transition to palliative and end-oflife care.
11
AWARENESS
Ambition 1
People - both healthcare professionals and the general public - understand
importance of kidney disease is lost with generic messaging. Most people will be aware that
the factors that increase the risk of kidney disease, and action is taken to
obesity is a risk factor for heart disease, but few will appreciate the links with the kidney.
reduce these risks.
Although chronic kidney disease is common and harmful, the health promotion within these
• A clear and consistent message to raise awareness of kidney disease in the general
public is delivered and sustained, concentrated on those at highest risk, particularly
South Asian and black populations and more deprived socio-economic groups.
• Public health campaigns are enhanced to recognise the importance of kidney disease.
campaigns is overwhelmingly geared towards prevention of diabetes and cardiovascular disease.
“
I think this is the most important
ambition as prevention
is always better than cure…
“
Key factors
• Inequalities in public health that increase the risks of kidney disease are highlighted
and tackled.
• Providers and commissioners of healthcare are educated on the links between
cardiovascular disease, kidney disease and diabetes.
Commentary
Awareness of kidney disease in the general population is very low. Most people who are at
risk of kidney disease do not know this and cannot therefore modify their risk. Clear jargon-free
information that people can understand should be developed for the audience at risk and made
freely available. This work should build upon existing examples of good practice, for example
Kidney Research UK’s ‘A Better Life Through Education and Empowerment’ programme, which
sought to raise awareness of kidney disease in black and minority ethnic communities (1).
Several public health campaigns, for example Change4Life and the Food Standards Agency
campaign to reduce salt intake launched in 2004, are relevant to kidney disease. An evaluation
of the latter indicates their potential effectiveness (2). However, there is a danger that the
12
to “develop and implement…. policies that reduce the prevalence of cardiovascular risk
factors in the population, and reduce inequalities in risks of developing heart disease” (3).
Kidney disease disproportionately affects people from more deprived socio-economic groups,
and the prevalence of its most important risk factors, including diabetes and smoking, is higher
“
I strongly feel a great deal of education
of the general public into kidney disease
awareness needs to be done.
“
The National Service Framework for Coronary Heart Disease included a clear call for the NHS
in these groups (4). Ethnicity is a critical factor: there is good evidence that kidney disease
progresses more rapidly in South Asian and black populations, resulting in higher rates of renal
replacement therapy (5). Obesity is another major, and potentially modifiable, risk factor for
the development of kidney disease, in people with and without diabetes (6), and the rising
prevalence of obesity is likely to have far-reaching public health consequences. Government
needs to highlight and address the social and material determinants of inequalities in health
that give rise to a higher risk of kidney disease for particular groups within the population.
The knowledge base in kidney disease has expanded dramatically over the last ten years.
However, better education of healthcare professionals is necessary to disseminate this new
information. There is now incontrovertible evidence that impaired kidney function (i.e. a reduced
estimated glomerular filtration rate, eGFR) and the presence of albumin in the urine (albuminuria)
are strong independent risk factors for many important adverse outcomes, including death from
any cause, cardiovascular death (7), progressive kidney disease, end-stage renal disease and
acute kidney injury (8). A diagnosis of chronic kidney disease also has important implications
for patient safety. Training curricula should be updated to reflect this learning. Education of
commissioners is equally important. The inclusion of chronic kidney disease within a broader
vascular policy and commissioning framework (9) should increase awareness and support
better care, but it is important that models developed to manage the cardiovascular diseases as
a single family do not result in a loss of identity for kidney disease.
13
IDENTIFICATION
Ambition 2
All people with kidney disease are correctly identified and monitored.
Key factors
• People with risk factors for chronic kidney disease are identified and offered testing.
• People identified with chronic kidney disease are monitored regularly as recommended
in national guidelines.
• The significance of chronic kidney disease as a risk factor for cardiovascular disease,
acute kidney injury and avoidable harm due to poor prescribing, is appropriately
recognised and addressed.
• High quality research is conducted to test interventions to reduce cardiovascular risk
in people with kidney disease.
• General practice incentives, for example pay-for-performance indicators, for chronic
kidney disease are aligned with guidance issued by the National Institute for Health
and Care Excellence on the identification and management of chronic kidney disease.
• The NHS Health Check programme, or a similar scheme, is implemented fully.
• The kidney community works closely with allied specialty organisations to improve the
detection of kidney disease.
monitored as recommended by NICE. This is particularly important because many people with
kidney disease do not have symptoms until the disease process is relatively advanced.
The proportion of adults with CKD Stages 3 to 5 recorded on GP registers has reached a
plateau of just over 4% (11), against an expected prevalence of at least 6% estimated from
epidemiological studies in the UK (12)(13)(14). There are over 42 million people aged 20 and
over in England and Wales from the 2011 Census (15), and it can therefore be estimated that
there are more than 1 million people with CKD Stages 3 to 5, who have not been correctly
identified. The consequence for this “missing million” is that many opportunities to improve
outcomes are missed. There is major geographical variation in the identification of kidney
disease, with the registered prevalence of CKD Stages 3 to 5 remaining below 2% in some
Primary Care Trusts/Clinical Commissioning Groups (11).
The factors underlying the under-diagnosis of CKD are complex. Variability in the awareness of
clinical practice guidelines amongst primary care practitioners drives inconsistent care. However,
more fundamentally, the kidney community has yet to adequately address the widespread
scepticism, particularly in general practice, of the significance of a CKD diagnosis. Many
practitioners have understandable concerns over the potentially negative effects of labelling
large numbers of asymptomatic individuals with a chronic disease (16). Once CKD has been
Commentary
identified, there may be uncertainties about how best to communicate the diagnosis and its
Large numbers of people with kidney disease remain unidentified. The National Institute for
implications to patients. We know that patients with a diagnosis of CKD may experience
Health and Care Excellence (NICE) Quality Standard 1 mandates that people with risk factors for
difficulties that are both practical (for example problems with travel insurance) and psychological.
chronic kidney disease (CKD) are offered testing, and people with CKD are correctly identified
We need to ensure that there is a more appropriate understanding of what CKD means, both
(10). CKD is an important risk factor for acute kidney injury (AKI), and detection will also support
inside and outside the healthcare system.
our ambition to prevent AKI. Once identified, people with kidney disease need to be regularly
The designation of CKD as a Clinical Priority by the Royal College of General Practitioners for
14
2013-2016 should allow refinement of the message around kidney disease, emphasising CKD
adverse events, than those with reduced eGFR but no albumin in the urine (7)(8). The latter is
as a cardiovascular risk factor, the use of proteinuria testing to stratify risk, and improving
widely unappreciated, and close co-operation between kidney organisations and general prac
patient safety through better prescribing and avoidance of acute kidney injury. It is vital that
tice is essential to highlight and reinforce this message, so that these people can be advised and
these messages are reinforced and sustained. We also need better evidence on how to reduce
helped to reduce their risk.
risk in CKD, particularly in terms of important cardiovascular endpoints.
The NHS Health Checks programme represents an important opportunity to improve the
High quality research is required to fully establish the trade-offs between benefit and harm,
detection of vascular disease in the population. Estimates suggest that the programme has
even for interventions of proven clinical efficacy. This is particularly so in the case of some
the potential to detect at least 20,000 cases of diabetes and kidney disease per year (20), but-
types of blood pressure lowering drugs (angiotensin-converting enzyme inhibitors and
this potential is as yet unrealised. Uptake has been highly variable and in a number of localities
angiotensin-receptor-blockers), which reduce the progression of renal disease in people with
checks have been offered to 1% or less of the eligible population. The responsibility for Health
proteinuria, but may increase the risk of acute kidney injury (AKI). The publication by NICE of
Checks was passed to local authorities in April 2013, and we echo calls from Diabetes UK that
updated guidance for CKD and new guidance for AKI (17) provides the opportunity to define
local authorities are fully funded to deliver the programme, including any necessary follow-up
harmonised research recommendations to address such uncertainties.
action, and that the scheme is overseen by a national implementation team at Public Health
It has been argued that labelling a significant minority of the adult population with a diagnosis
England (21).
of chronic kidney disease is an example of over-diagnosis (18). The difficulties are sharpest in
Disease prevention and better early management will be helped by the relevant professional
older people in whom CKD is extremely common: the prevalence in people aged 75 and over
and patient bodies speaking with one voice. The kidney community must work with allied
may be as high as 50% (12) and a label of “disease” here may not be helpful. However, the
specialty organisations to highlight the significance of kidney disease, its determinants and its
debate should not be focused on semantics or indeed the risks of end-stage renal disease, which
consequences. Data from the National Diabetes Audit, indicating that urine testing for albumin
are low, but rather on the significance of CKD as a risk factor for cardiovascular disease and
remains the least frequently completed care process in people with diabetes (22), must be seen
avoidable harm (19).
as a call to action.
General practice is currently incentivised to identify and treat people with CKD Stages 3 to
5. This needs to be reconsidered. The NICE Quality Standard for CKD covers all CKD stages,
including Stages 1 and 2, where the eGFR is preserved but there is another marker of kidney
damage, typically albuminuria. This is important because there are many people with CKD Stages
1 and 2 (6% of adult women and 9% of adult men (14)) who are frequently at greater risk of
15
SELF-MANAGEMENT
Ambition 3
All people with kidney disease are offered as much information as they would
were unaware of their diagnosis (23). In the Health Survey of England only 1.5% of males and
like in order to understand and manage their condition.
1.3% of females were aware they had kidney disease (14). Concerns over the validity of a CKD
Key factors
• All people with kidney disease are informed of their diagnosis, and the meaning of
their diagnosis, at the earliest opportunity.
• Information (which is adapted for kidney disease stage and level of risk) is made
accessible online and in hard copy and presented in a way in which people can
understand easily, whatever their level of knowledge and education.
• Information is provided in the main community languages for black and minority
ethnic patients alongside interpreters where needed.
• People with chronic kidney disease have a current agreed care plan that is appropriate
to the disease stage and rate of progression, and recognises the associations between
kidney disease and other conditions, including diabetes, cardiovascular disease and
depression.
• The multi-professional healthcare team encourages self-management and supports
patients to manage their condition as much as they choose.
diagnosis and a desire not to induce unnecessary anxiety or “medicalise” the ageing process
may play a role in this. There is a need for guidance and help for healthcare professionals on
how to communicate the nuances of a CKD diagnosis in an individualised fashion. Informing
people of the diagnosis must not create unnecessary harm, particularly in older people in whom
reduced kidney function is extremely common, and to whom the use of the words “chronic” and
“disease” might result in distress unless accompanied by a sensitive explanation.
There is also an important patient safety element to making people aware of their diagnosis.
People need to know they have CKD to be aware of their increased risk of acute kidney injury.
They should be advised to talk to their healthcare providers about medicines management if
they have significant intercurrent illness, as the temporary cessation of certain blood pressure
medications at such times may be beneficial.
The significance of a CKD diagnosis will vary according to many factors, including the stage of
disease, rate of progression and primary disease. In many patients, a CKD diagnosis is of more
significance as a risk factor than a disease process. It is vital that these aspects are discussed
• High quality research is conducted to determine which aspects of self-management
with patients, and that the needs of black and minority ethnic populations, in whom advanced
are effective, whether there are differences according age and ethnicity, and the
renal disease is more common, are understood and respected. Helpful advice for people with
results used to improve quality of patient care.
kidney disease is available on the websites of the kidney charities contributing to this report
(24)(25)(26).
Commentary
The practice of medicine has rightly become less paternalistic over the last two decades. The
Self-care begins at diagnosis. However, healthcare professionals do not always inform people
National Institute for Health and Care Excellence Quality Standard 3 emphasises the importance
that they have a diagnosis of chronic kidney disease (CKD). This non-disclosure is a significant
of care planning for people with CKD (10). Within this plan, the healthcare team should be
issue: one study indicated that 41% of patients with CKD Stage 3 from 32 general practices
aware of the extent to which a patient is engaging in self-care. Kidney disease frequently
16
co-exists with diabetes and cardiovascular disease.
Patients need to understand these
relationships in order to support lifestyle change. The fact that up to one-quarter of people
with CKD may have depression (27) is less widely appreciated and should be highlighted to
all healthcare professionals who work with patients with kidney disease, so that action can be
Patients should be encouraged to become more involved in their care, with involvement from
families or carers if the patient wishes. However, not all people will choose to manage their
conditions and others will lack self-confidence or have limited sight, hearing or memory, so
self-care is not an option for everyone. Re-assessment with the individual will be important as
people’s views and perceptions of health change over time.
Renal services in hospitals were at the forefront of the development of multi-professional
healthcare teams. Whilst some people with kidney disease will continue to require treatment
from renal specialists, the majority of people are managed in primary care. It should not be
forgotten that the provision of information to allow patients to make informed decisions is
“
“
I have not been offered much insight into
my condition, I’m still confused by it all.
“
“
taken to enable better access to psychological therapy.
Let’s not forget the families need support too.
as relevant in primary care as it is in the pre-dialysis setting. The roles of the practice nurse,
pharmacist and other allied healthcare professionals have also grown in primary care, and these
expanded roles should be supported through training and education.
There is a need for more research to support self-care. Although national guidance recognises
the importance of self-management in kidney disease, clear evidence of the benefit is currently
lacking. This deficiency should be addressed in well-conducted studies, including outcome
measures which are important to patients as well as healthcare professionals. Older people
and those from black and minority ethnic groups must be well-represented in these studies.
17
PATIENT-CENTRED CARE
Ambition 4
Care is centred on the person, taking into account individual needs and
preferences, quality of life, symptom burden, and the presence of other
data are important to improve performance, and the chronic kidney disease (CKD) National
medical conditions.
Audit is the first programme within NCAPOP to include a specific quality improvement
Key factors
• The ethnicity, religion and cultural background of the patient are taken into account
when providing person-centred care.
• Where patients choose, families and carers have the opportunity to be involved in care
planning.
• Greater emphasis is placed upon recording and managing quality of life and symptom
burden in people with kidney disease, using validated tools.
• Primary care and specialist services treating people with kidney disease work together
and communicate effectively, so patients are always seen by the most appropriate
person, avoiding duplication of effort and consultations that add no value.
• Clinical practice guidelines and quality markers for kidney disease, diabetes and
cardiovascular disease are, where possible, brought together to encourage holistic
treatment of people with vascular disease.
• Advances in technology are used for the benefit and convenience of patients and
carers, and to support online access for patients to their diagnoses, treatment plans
and test results.
element within its specification.
However, many factors other than clinical performance are important to patients. Personcentred care is the delivery of a system of care that takes into account the individual needs and
preferences of the patient and their family/carers. Patient needs include clinical needs, but often
are more holistic in nature, and must be seen in the context of an individual’s ethnicity, religion
and culture, as well as their lifestyle. Patients may depend upon family members and carers for
practical and emotional support, and these people should also be involved in discussions about
care where patients choose it.
Quality of Life (QOL) is increasingly seen as an important marker of the quality of care in the
management of long term conditions. The extent to which patients’ perceived physical and
mental functioning are affected on a day to day basis by a chronic disease is an especially
important marker of care in the management of kidney disease, where even with the best
treatment options available, there can be a significant reduction in patients’ sense of well-being.
QOL is significantly reduced in advanced CKD across all treatment types (28) and strongly
associated with both hospitalisation and mortality (29).
People with advanced kidney
disease (both pre-dialysis and dialysis) experience a wide range of disease and treatment-related
physical and emotional symptoms (30) which will contribute to this marked impairment in QOL.
Commentary
Where beneficial treatments for quality of life are available, care is not applied consistently.
Clinical data concerning the identification and management of kidney disease are freely
Despite their importance, data on health-related QOL or symptom burden scores are not yet
available from the UK Renal Registry, UK Transplant Registry, the National Clinical Audit and
systematically collected or measured in UK renal centres, and this should be a focus of future
Patient Outcomes Programme (NCAPOP), and the Quality and Outcomes Framework. Such
activity for the UK Renal Registry. Patients with poor QOL and symptom scores are likely to have
18
Patient Reported Experience Measures, co-developed between patients and healthcare profes-
can not be seen as a replacement for face-to-face interactions, but should be developed.
sionals, are not yet available to address this issue. The development of instruments that are
Information Governance is essential to protect patients, but must also enable information
appropriate, valid, reliable, responsive, precise, interpretable, feasible and acceptable (31)
sharing where it is appropriate and beneficial. The Renal Patient View system (32) which can
should be encouraged and funded.
be accessed by kidney patients in secondary care and provides online information on diagnosis,
People with kidney disease frequently have other long term conditions, and may need advice
from both generalist and specialist healthcare professionals. Better integration across both
NHS organisations and disease boundaries is vital. There is variation in adherence to referral
guidelines in primary care. Patient flows between and within secondary care need to be better
described in order to improve. Anecdotal evidence suggests that patients are still being treated
in disease “silos”. Even within renal services, practice is highly variable: patients may attend for
a single visit in order to define a long-term management plan for primary care, or be followed
up in a hospital setting on an indefinite basis, not necessarily with a clear justification. Renal
healthcare professionals need to work with colleagues in primary care, diabetes and cardiovascular disease to better define our care pathways.
It is important that we have a description of safe and effective care that transcends NHS
treatment and test results, should be seen as an exemplar for involving people in their own care
through the use of technology.
“
“
“
“
Person-centred care also means that people are treated at the right time in the right place.
I would also like to see more about listening
to what the patient says.
From both my professional work and
experience as a patient, I feel that there is
a gap in the care given to the chronic renal patient
who is not on dialysis or transplanted.
structures. Silo management, which is centred on the needs of the healthcare provider rather
than the patient, will be perpetuated by clinical practice indicators that are disease-specific.
Efforts should be devoted to the harmonisation of clinical targets across the vascular specialties
and the development of quality indicators relevant to people with complex medical disease.
Technology has a role to play in delivering person-centred care. Technological advances must be
utilised for the convenience and benefit of service users and carers. The information technology
to offer virtual consultations exists but is under-utilised. The role of Telemedicine in kidney
disease, for example remote monitoring to support self-care, is not yet well defined and
19
ACUTE KIDNEY INJURY
Ambition 5
Avoidable harm related to acute kidney injury is prevented in all care
preventable (33). It has been estimated by NHS Kidney Care that AKI costs the NHS between
settings.
£434 million and £620 million per year (34). Preventing avoidable cases of AKI could save the
health service up to £185 million per annum, and prevent up to 12,000 unnecessary deaths (35).
Key factors
• Acute kidney injury is highlighted to healthcare professionals, patients and the public
as a major preventable public health problem and critical issue for patient safety.
The risk factors for AKI are well defined, and include pre-existing chronic kidney disease (CKD),
increased age, heart failure, diabetes mellitus and sepsis. It can also affect young babies,
where it is not well recognised. Even minor reductions in estimated glomerular filtration rate
• People at high risk of acute kidney injury, such as those with pre-existing chronic
(eGFR) or small elevations in urine albumin are important independent factors that predict the
kidney disease, heart failure, sepsis, diabetes mellitus, liver disease, and severe
development of AKI: people with stage 3A CKD and a normal albumin:creatinine ratio (ACR) are
diarrhoea, especially in babies, are identified and action taken to reduce their risk.
at almost 5 times greater risk; people with low grade albuminuria (ACR 3 to 30mg/mmol) and
• People with established acute kidney injury are treated promptly.
an eGFR greater than 60ml/min/1.73m2 are at up to 3 fold increased risk (36). All healthcare
• All patients with established acute kidney injury who may benefit from care within a
professionals need to be aware of these relationships, which underscore the importance of
• Renal units are adequately resourced to support people with acute kidney injury.
• Acute kidney injury is a priority topic for the education of undergraduates, postgraduates,
practising doctors and other members of the multi-professional healthcare team.
• A robust evidence base is developed to support healthcare professionals treating
acute kidney injury.
identifying all people with CKD.
“
There needs to be greater awareness
in primary care for prevention.
“
renal unit are transferred promptly and safely to that unit.
• Acute kidney injury is recognised as an important risk factor for chronic kidney disease.
Commentary
Acute kidney injury (AKI) is a major cause of preventable harm. A 2009 report looking at the
processes of care of patients who died in hospital with a diagnosis of AKI found that only 50%
of AKI care was considered good. It highlighted poor assessment of risk factors for AKI, an
unacceptable delay in recognising post-admission AKI in 43% of patients, poor and inconsistent
coding of AKI and inadequate referral to the renal team. Up to 30% of cases were felt to be
20
An assessment for the risk of AKI should form an essential component of any acute medical or
condition. People recovering from an episode of AKI should be regarded as at greater risk of
surgical assessment. The acute treatment of patients in at-risk groups should be optimised in
both developing new CKD and of progression of existing CKD. They should be offered
such a way as to minimise the risk of AKI developing. Primary care also has an important role
information to help avoid future episodes and be monitored in primary care accordingly.
Patients who are at increased risk of AKI should be aware of this so they can take appropriate
action to reduce their risk. Some medications, particularly certain classes of blood pressurelowering drugs and non-steroidal anti-inflammatory agents, the latter available over-the-counter,
are associated with an increased risk of AKI, especially in situations where patients may
become fluid depleted, or during intercurrent acute illness. NICE Quality Standard 7 mandates that
people with CKD who become acutely unwell should have their medication reviewed, and
receive an assessment of volume status and kidney function (10).
Established AKI should be treated promptly in accordance with national guidelines. Where AKI
is severe, unexplained, complicated, fails to respond to treatment or occurs in the context of
pre-existing severe CKD, the National Institute for Heath and Care Excellence recommend that
“
Recently during a holiday I picked up
a gut infection in the swimming pool.
In the middle of a severe bout of vomiting
and diarrhoea I passed out and was rushed
to the local hospital. Luckily for me, the A&E
staff were alert to the AKI risks in renal
patients, they diagnosed the early stages and
quickly sorted out my dehydration.
“
in the risk assessment and prevention of AKI.
a specialist renal opinion should be sought urgently (17), but current practice is variable. It is
essential that renal units have a skilled workforce, sufficient capacity and agreed local protocols
to allow the prompt and safe transfer of patients who need dedicated specialist renal input.
AKI is a relatively recent priority for the kidney community and awareness of AKI in general
practice in particular is extremely low. It must feature prominently in the training curricula of
all healthcare professionals. The message that AKI is preventable and harmful needs urgent
dissemination to practising clinicians in primary as well as secondary care, and should be
supported by the tools required to implement best practice.
The evidence base for the treatment of AKI is limited. High quality research is required to
determine the optimal approaches for staging, preventing, ameliorating and treating the
21
PREPARATION AND CHOICE
Ambition 6
All people approaching end-stage renal disease, or moving from one type of
• Pre-emptive transplantation (if this is an option) and timely vascular access and
treatment for end-stage renal disease to another, understand and are given
peritoneal dialysis catheter insertion services delivered by healthcare professionals
sufficient time and support to prepare for a treatment that is suitable for
with the appropriate skills and experience are available to all patients, so that no-one
them, chosen from the full range of options.
commences dialysis with emergency access where this is avoidable.
Key factors
• All kidney units promote the full range of treatments for end-stage renal disease
• Patients with end stage renal disease who are referred late to renal services are
offered the same information, support and access to treatment types as those people
referred early.
free of institutional bias, including pre-emptive transplantation, home-based dialysis,
self-care dialysis and conservative care.
Commentary
• A multi-professional kidney team sees all patients with advanced chronic kidney
People with end-stage renal disease (ESRD) do not currently have access to the full range of
disease at least one year before it is expected that end-stage renal disease will
treatments on a consistent basis. Where possible, all suitable patients must be pre-emptively
develop, and maintains continuity of care for each patient as they move from one
listed or transplanted. Instead, access to pre-emptive transplantation, either from a living or
treatment type to another.
cadaveric donor, is influenced by location. There is also variation between units in their approach
• Taking into account personal circumstances, the choice of treatment is led by the
to home haemodialysis, self-care dialysis, acute peritoneal dialysis (PD) and assisted PD. Data
patient and their families or carers and supported, where people choose it, by
from the UK Renal Registry indicate that, in 2011, 20% of new renal replacement therapy
discussions with their peers.
patients were treated with PD. However, the proportion treated with PD in individual renal
• Treatments for end stage renal disease are regarded as complementary, with the
centres ranged from 0% to 47%, and was less than 10% in several units (37). The institutional
healthcare team promoting an integrated long-term approach that best utilises all
factors that underlie much of this inequity and restrict patient choice need to be highlighted and
treatment types.
tackled. All appropriate treatments must be available to all patients irrespective of where they
support patients who are choosing a treatment type for end-stage renal disease and
whether this varies according to factors such as age and ethnicity, and the results used
to improve care for all patients.
live, so that they can select the option that best meets their clinical and lifestyle needs.
“
Other patients, who have long
experience of CKD, may be able to help
kidney patients on their
journey, particularly as it starts
“
• High quality multi-professional research is conducted to determine how best to
22
Sufficient time is required to prepare for renal replacement therapy (RRT). Late referral for RRT to
or disadvantages of the various sequences and combinations should be considered in the
renal units is a major and avoidable cause of poor outcome. The rate of late referral has reduced
shared decision-making process, and consideration given to the preferential use of pre-emptive
significantly since 2006, driven by improvements in the identification and treatment of kidney
transplantation over any dialysis where this is possible, and of peritoneal dialysis over
disease in primary care. It has however changed little since 2009 and remains highly variable
haemodialysis in those with significant residual kidney function and without significant
across the UK, with more than 30% referred within 90 days of commencing renal replacement
co-morbidities (38). The needs of patients and their options for treatment should be regularly
in a number of centres (37). Whilst some late referrals will be unavoidable, closer working and
reviewed with the multi-professional team.
better communication between primary and secondary care will help minimise these and reduce
unwarranted geographic variation. Preparation for RRT is an exemplar for shared decision
making and requires the involvement of an appropriately skilled multi-professional team,
including doctors, nurses, dieticians, pharmacists and social workers. The multi-professional
team also have an important role in ensuring that any transitions of care experienced by kidney
patients are smooth. Patients are at their most vulnerable when moving from one treatment
type to another. This can be compounded by a loss in continuity and communication, as the
clinical team providing the care within the kidney unit may change simultaneously. Renal units
must ensure that effective systems of handover are in place so that patients are clear who their
key points of contact and support are.
People with existing kidney disease, particularly those who have experienced transplantation or
dialysis, can all be part of the multi-professional team - peer support for newer patients is very
important and helpful. Access to other kidney patients, especially when considering choices of
treatment, should be supported and made possible by all renal units.
Many people with ESRD will experience more than one treatment type during their lifetime.
It is important that decisions to choose a particular treatment are not seen in all-or-nothing
Proven aids to decision making can enhance (not replace) time spent with the healthcare team.
Kidney services have been at the forefront of developments in shared decision making and
the use of patient decision aids. A programme of multidisciplinary research, co-designed by
patients, will provide us with the best information on how healthcare professionals should support
patients when they are making decisions about their treatment for ESRD.
Whilst early referral is a pre-requisite, good practice within renal units is vital to ensure a good
transition onto renal replacement. There is evidence that shows outcomes are less good in
patients starting haemodialysis via a central venous catheter. However in 2011 only 43% of
patients commenced haemodialysis with definitive vascular access, and significant variation
between centres was apparent (39). This is not explainable solely on the basis of referral practices:
the need to provide a flexible, dynamic access service for both haemodialysis and peritoneal
dialysis should be regarded as a key target for improvement within renal units.
Patients with ESRD who are referred late to renal services must not be disadvantaged compared
with those referred early; they must be offered the same information, education and choices,
and have access to an expedited service for definitive vascular access or PD catheter insertion.
terms. Discussions with patients should emphasise, where relevant, a longer term approach,
where treatment types are seen as complementary rather than competitive. The advantages
23
TRANSPLANTATION - Equity in transplantation
Ambition 7
Listing for transplantation is based solely on clinical need and suitability, and
at approximately 26,000 (37), far exceed the 6,300 on the waiting lists for kidney and kidney-
is not influenced by ethnicity, socio-economic status, or where the potential
pancreas transplantation as at April 2013 (41). It might be argued that those units listing a
transplant recipient lives.
lower proportion of their end-stage renal disease (ESRD) population are targeting the use of
Key factors
• Best practice guidelines for the assessment of potential transplantation recipients are
followed in all units.
• The achievement of renal units against best practice guidelines is monitored and the
results for their units made freely available to kidney patients in a form they can understand.
• High quality research is completed to determine the factors that influence whether
patients are placed on the waiting list and/or transplanted, and the results of this
research used to increase the consistency and quality of care.
• Progress with transplant work-up investigations and all changes in transplant list status are discussed with patients.
• The system for funding work-up for transplantation is open and transparent so that the
commissioning process cannot be a barrier to transplantation.
Background
UK Renal Registry and UK Transplant Registry data highlight significant variation in access to
the renal transplant waiting list and in rates of transplantation. There are significant differences
between units in the proportion of people listed pre-emptively or within two years of
commencing dialysis, the proportion transplanted within two years of commencing dialysis, and
the median time to listing. These differences are not explainable on the basis of case mix alone
(40). Transplantation is a scarce resource and the numbers of people receiving dialysis,
this resource to those most likely to benefit. However this is not reflected in post-transplant
outcomes and suggests instead that the processes and philosophies within units are important
factors that need to be changed.
There are 52 main renal units in England, of which 20 are transplanting centres. Although
guidelines covering the process of assessment for transplantation have been published by
the Renal Association and British Transplant Society (42), these guidelines are not universally
followed. Patients need to know what the broad criteria are, for example with respect to body
mass index and cardiovascular disease, and what to expect during the work-up process, no
matter where they live.
Transplant performance data for each renal centre are now available through collaboration
between the UK Transplant Registry and UK Renal Registry. The publication of such comparative
information, including data on listing, should encourage and enable units to share good
practice, raise quality and reduce variation. It is also important that potential transplant
recipients and their families are able to see how their units are performing through the
publication of summaries in which data is presented in a way that patients can understand.
Health inequalities may be important determinants of variation between units. People from
more socially deprived areas have poorer access to the transplant waiting list (43) and are less
likely to receive live donor kidney transplants (44). Patients from ethnic minority groups are no
less likely to be listed (43), but wait considerably longer to receive a kidney transplant (45).
Research is required to explore these issues fully. The Access to Transplant and Transplant Outcome
Measures (ATTOM) study has been funded by the National Institute for Health Research (46).
24
It is vital that outputs from this important work are shared and used to increase the consistency
a regular basis. Staff caring for kidney patients and transplant recipient co-ordinators are often
of care. The decision to list someone should always be reached in conjunction with the patient,
not co-located and integration, which includes sharing of data, between these two groups
including a realistic discussion on likely waiting times and the potential for a living donation.
therefore needs to be improved.
The process of work-up for kidney transplantation can be long and is a source of distress for
Under the current commissioning framework, the funding streams to support the complex
many patients, particularly when multiple tests and opinions, for example on cardiovascular
process of work-up for transplantation are not clearly defined. This deficiency must be addressed
fitness, are deemed necessary. Incidental abnormalities of unknown significance are frequently
so that this lack of clarity does not delay transplantation (for example if kidney specialists are
uncovered, resulting in more testing, waiting and uncertainty. Information on their progress
discouraged from referring directly to other specialists who need to become involved in the
through work-up and any changes in transplant status should be fully communicated to all
work-up process) or even prevent suitable recipients accessing the transplant waiting list.
patients in a timely manner. For example, if a patient is temporarily removed from the transplant
list due to an intercurrent illness, they will need to know that their status is being reviewed on
“
“
“
A job change and house move took me away from a hospital
where I was on the transplant list to another where I wasn’t placed on the list.
“
There are … differences in criteria (e.g. for transplant eligibility) within renal units
- this is inequitable and confusing for donors/recipients/renal staff
25
INCREASING TRANSPLANTATION
Ambition 8
Commentary
The number of transplants, from both living and deceased donors, is increased
Transplantation generally offers both survival and quality of life benefits over dialysis and is
such that all people likely to benefit from a transplant have the opportunity
cost- effective. This is also true for older recipients with no obvious contraindication (47).
to receive one.
Historical data indicate that survival in those who are transplanted is better than in age-matched
Key factors
• The role of pre-emptive kidney transplantation as the treatment of choice for all suitable
patients with end-stage renal disease whenever a living donor is available is promoted
to patients and healthcare professionals.
• Living kidney donation is widely recognised by the general public as a valuable treatment
for end-stage renal disease in patients who are suitable for transplantation.
• Awareness of donation is strengthened in black and minority ethnic communities.
• An individual who donates a kidney is able to do so with appropriate ethical, financial,
physical and psychological support, before, during and after the donation process.
• Best practice is adopted in all units to minimise both the risk to donors and the disruption
to their lives from the work-up process.
• The commissioning arrangements for living donation are clear, and dedicated funding is
available to support donor work-up.
patients who remain on the transplant waiting list (48).
Living kidney donation offers better graft and patient survival to recipients and the chance
to avoid lengthy waits for deceased donor organs, at the expense of small risks to the donor.
Pre-emptive transplantation is associated with further reductions in graft loss and mortality
as compared to transplantation in people already on dialysis (49) and should be promoted to
both patients and healthcare professionals, within and outside renal services, as the optimal
treatment in patients who are suitable and have a donor.
For patients with diabetes who are suitable for transplantation of both kidney and pancreas,
then simultaneous kidney-pancreas transplantation or living donor renal transplantation may
both be regarded as treatments of choice.
There have been significant year-on-year increases in rates of deceased donor transplantation
to 19.1 per million population since the 2008 Organs for Transplant report (50) was published,
and the number of patients on the active transplant list has declined for the last four years (41).
• The number of people making a decision whilst alive to be a deceased donor is increased
Living donation is largely, and rightly, seen as a success in the UK. It now represents more than
and a record of their decision is available to healthcare teams whenever it is required.
a third of kidney donations (41), and we have seen a rise in non-directed altruistic donations.
• Information and support systems are made freely available to help families make consent
decisions on behalf of a deceased relative whose donation intentions are not known.
• Best practice guidance for surgeons performing organ retrieval is fully implemented to
optimise the proportion of donated organs from deceased donors that are used for transplantation.
However, there is a long way to go to before the UK transplantation rates rank favourably with
the best-performing countries in Europe. To increase numbers further, we should recognise and
promote the success of the living donor programme, but also improve it. The work-up process
needs to be streamlined. For example, where recipient and donor are not co-located there can
be unwarranted delays in preparation and a lack of clarity on who is driving the process and
which unit is paying for it.
26
Some units have successfully reduced the time taken from referral to activation and made ar-
rates to 80% by 2020 (55). Systems should be in place so that once an individual has made his
rangements for donors and recipients to be tested in the same place on the same day (51). This
or her intentions known this is formalised and accessible on the healthcare record when needed.
best practice should be shared, and the commissioning arrangements around donation clarified,
NICE have listed factors important in decisions to give or refuse consent for organ donation (56)
so payment does not represent a barrier to live donor transplantation.
and these factors should closely inform both the work and ethos of Specialist Nurses for Organ
Living donation is an inspirational example of selflessness. However, some living donors currently feel that the “care follows the kidney” (52). While they do receive an annual review,
Donation. Research is needed to better understand and learn from the experience of consenting. Families considering donation should feel supported but not pressured into doing so.
donors can feel that their needs and expectations are not fully met by post-donation care.
It is equally important that processes post-consent are improved. As NHS Blood and Transplant
The results of monitoring can cause confusion and may not be fully explained. Some may be
recognise, “opportunities for transplantation are lost at all stages of the process from offering
labelled as having chronic kidney disease. Unlike many transplant patients, live donors are not
to implantation and while there is a valid clinical reason for this in most cases, there are some
expert patients and their needs must be more fully understood. Recognising and valuing the
instances when variation in practice is unexplained” (55). Some centres decline more kidneys
contributions of living donors is an important way to improve the donor experience. Guidelines
than others, and yet patients at centres with higher decline rates not only experience longer
on the reimbursement of living donors for expenses incurred during work-up and surgery (53)
waiting times but outcomes that may be below average (57). If all units performed as well as the
should be fully implemented.
best, it is estimated that deceased donation rates could be increased to 27 donors per million
and celebrate live donor transplantation. Peer education programmes have shown real
potential for increasing the rates of organ donation, with community leaders able to lead by
example as demonstrated in national initiatives such as the National Black and Transplant
Alliance (54) and local community events.
Improvements are also needed to support the families of deceased donors in the decision to
donate. In 2009, the rate of refusal for donation after brainstem death (DBD) where the
deceased’s donation intentions were not known was as high as 50%, with rates of 77% in
population. Best practice guidelines for organ retrieval (58) should be implemented fully in all
units and the results of comparative audit made freely available to kidney patients.
“
“
We must work more closely and sensitively with the black and minority community to encourage
More awareness in ethnic minority
groups and involvement of
various faith / communities is required…
black and minority ethnic groups where the needs for transplantation are greater (41). Public
perceptions of transplantation are generally positive but awareness still needs to grow. A fresh
approach is called for if NHS Blood and Transplant is to achieve its goal of increasing consent
27
LIVING WELL WITH A TRANSPLANT
Ambition 9
A person who receives a transplant is enabled to manage their transplant and
information for patients is also required in many other areas. Patients need to fully understand
is supported to achieve the greatest possible benefit from it.
the possible side effects of their medications, and, after a successful transplant, practicalities
Key factors
• All the information necessary for patients and their families or carers to prepare for a
transplant, physically, emotionally and practically, is provided and discussed within the
work-up process.
• Specialists have a long-term responsibility to work with patients to help them manage
their transplant and any transplant-related complications.
• Specialist transplant advice is available to patients and other healthcare professionals
whenever it is needed.
• Specialists work closely and communicate effectively with other healthcare professionals involved in the care of patients with a transplant, avoiding duplication of effort, so
that any other conditions the patient may have are treated safely.
such as who will be prescribing them.
The challenge of moving from a severe fluid restriction, which may be as low as half a litre per
day, to a need in many cases to drink copious volumes of liquid to maintain hydration should not
be under-estimated. People can still experience uncomfortable symptoms post-transplantation
and will often have other conditions and so can be disappointed with their outcomes, especially
as expectations of transplantation are high. One-quarter of transplant patients may experience
clinically significant symptoms of depression (27)(59). This is a frequently neglected area. The
right tools to describe the patient experience need to be systematically applied, and the results
used to help patients improve their quality of life. Validated and co-designed Patient Reported
Experience (PREMs) and Patient Reported Outcome Measures (PROMS) relevant to all patients
with kidney disease are urgently needed.
• Clinical practice guidelines for the management of kidney transplant recipients are
It is essential that kidney specialists have regular long-term input into the care of transplant
fully implemented, and renal units’ performance against these standards measured
patients, to help them manage their transplants and to prevent and address transplant-related
and published.
complications such as infection and cancer, which will not be well-understood by generalists.
Commentary
It is not feasible to prescribe a particular model of care relevant for all localities, but care must
be delivered by appropriately accredited healthcare professionals with the appropriate skills
The quality of life in people approaching kidney failure and in those on dialysis is likely to be
and experience at a location with timely and unrestricted access to the full range of necessary
reduced. Major restrictions in diet and fluid intake are the norm, and depression is extremely
diagnostic and therapeutic interventions.
common (27). A kidney transplant is a sudden and major change to the recipient’s way of life,
and people need to be well prepared in advance for all the potential implications. Patient
experience suggests the current system does not prepare people to live well with their transplant
as it tends to focus on overcoming the medical barriers to transplantation (52). However
Expert advice from specialists may be required at any time. A patient’s transplanted status can
influence both routine and emergency care. 24-hour cover from renal units must be available,
and both patients and other healthcare professionals need to be aware that this advice should
be sought and know how to access it.
28
of primary care, it is important that transplant recipients are aware that the specific formulations
of the anti-rejection medicines are important and that they should not be switched from one
brand of drug to another, or from a branded to a generic version, without prior discussion with
“
“
“
between generalists, specialists and patients is essential. Where prescribing is the responsibility
“
Care for other conditions will generally be provided from general practice. Good communication
Patients seem to have to look for help on
internet forums, as they don’t seem to get much
time from specialists at present.
their specialist. The potential for the patient’s transplanted status to influence the treatment of
conditions not directly related to the transplant should always be considered. However patient
experience suggests current practice is highly variable (52), and that care tends to be centred
on the healthcare system or professional rather than the patient. General practitioners currently
collect data on blood pressure and kidney function, for example, to support practice payments
under the Quality and Outcomes Framework. Such data are also collected by transplant
centres, but not routinely shared, necessitating a repetition of testing and incurring additional and
unnecessary costs.
Clinical practice guidelines for the management of renal transplant recipient have been
published, nationally by the Renal Association (60) and internationally by Kidney Disease
Improving Global Outcomes (61), the latter also with broad relevance to UK practice (62).
The greater challenge, to achieve widespread implementation, will be supported by the
measurement and publication of performance against these guidelines, so patients can
understand the quality of care that their unit is providing.
My GP recently told me, ‘It’s over a year
since we had any blood test results for you.
The kidney doctors don’t let us have theirs
so we need some of our own.
29
DIALYSIS AS A SPECIALISED SERVICE
Ambition 10
Dialysis care (including preparation for dialysis) continues to be
dialysis preparation, dialysis techniques, transplantation, and end of life care are essential,
commissioned as a specialised service, and is delivered by renal units with the
supported by a full multi-professional team.
capacity and workforce necessary for all patients to receive high quality
dialysis using their chosen method.
Key factors
• Specialist clinicians provide dialysis care for all modalities, including dialysis
preparation, and treat all dialysis-related problems and complications.
• All patients receive dialysis in a safe environment provided by renal units properly
resourced and staffed by a skilled workforce committed to delivering high quality care.
• People on long-term dialysis receive the best possible therapy delivered in accordance
with national guidance.
• Funding is allocated to permit all renal units to maintain sufficient capacity for their
population to dialyse with the flexibility to support personal circumstances.
• Budgeting, capacity and workforce planning take into consideration changes to the
future overall demand for dialysis, trends in demand for each type of treatment, and
regional variation in demand.
Commentary
Effective integration of the different elements of specialist care is necessary to deliver quality
treatment for ESRD. Therefore no single element can be commissioned separately. Fragmentation
of the kidney care service would mean patients losing the continuity of care on which they
depend. Delays at any point in the service (caused through uncoordinated commissioning or
other reasons) can have severe and far-reaching consequences. Patients who require dialysis
depend on it to stay alive. Every time they dialyse, they are receiving life-preserving treatment.
Conversely, when a patient is unable to do so, they are put at risk.
Detailed planning, with a longer time-frame than that required to deliver primary care, and
significant capital investment in specialised equipment, are needed to procure dialysis services.
Primary care clinicians and commissioners do not have the level of knowledge, resources or
experience to manage or commission these services. For every 1,000 patients for which a GP
is responsible, 100 or more will have chronic kidney disease (all stages). However, only two are
likely to be receiving renal replacement therapy or conservative care.
Patients with ESRD must therefore be treated in adequately resourced and properly staffed
specialist renal units. Even within such units, current practice is variable. The Renal Association
has published clinical practice guidelines that describe standards of care for people receiving
Dialysis is a highly specialised procedure carried out in patients with many different underlying
renal replacement (63)(64). However centre-specific analyses by the UK Renal Registry continue
kidney disorders, with varying and complex co-existing medical conditions. An individual with
to demonstrate unwarranted variation in important clinical measures (37). A culture of
kidney failure may be treated, at different points in their life, with both haemodialysis and
continuous improvement is needed within units to meet and exceed these standards and deliver
peritoneal dialysis, and receive one or more kidney transplants. Patients receiving treatment
best care. This must be complemented by a culture of transparency, particularly between units
for end-stage renal disease (ESRD) frequently experience complications that are unique to their
and patients, to share and co-develop new developments and initiatives. Patient safety must
treatment. Specialists with knowledge and experience of the underlying primary renal disease,
never be put at risk through failings in infection control policy and procedures.
30
There are clear recommendations on minimum acceptable dialysis frequency and duration,
For most patients, dialysis is a long-term treatment that has a major impact on their lives.
and we must not allow any future changes in the financial environment within the NHS to
Dialysis capacity must support the needs of patients changing treatment method, patients
compromise this practice. It is not acceptable for patients to undergo haemodialysis less than
requiring renal replacement therapy for acute kidney injury, those training in self-care, and
three times per week unless there are exceptional circumstances. On the contrary, we need
patients who usually dialyse at home needing respite care. Units which are full are not able to
to develop flexibility around booking of dialysis times and to learn from innovative practice
offer all treatment options and support their patients. Sufficient capacity is essential to provide
elsewhere in the world.
the flexibility to support personal circumstances, including work, family commitments and travel.
Capacity is a critical issue for those commissioning and providing dialysis services. Although
there have been some improvements, the results of three annual national surveys (2010-2012)
conducted by NHS Kidney Care show that provision of haemodialysis varies widely across
England, particularly in terms of access to and distance from dialysis units (65). In some areas, there
remain gaps between demand and capacity. These shortfalls must be corrected. Furthermore it is
expected that the overall demand for dialysis will continue to increase. Although the numbers
There is a growing need for patients with infectious disease and those returning from high-risk
areas to dialyse in isolation. Therefore planning across all elements (including budget, capital
investment and workforce) must take into consideration these factors and ensure that there
is capacity to meet the needs of all patients wherever they live. Renal units must be allocated
the resources to meet these needs and funding must be provided with the stability to permit
planning over the long term.
developing ESRD each year have plateaued in the UK, the total ESRD population continues to
grow. In patients aged over 85, these prevalence rates have doubled between 2006 and 2011 (37).
“
“
I totally agree (with this ambition), especially as
I am due to start dialysis in 3-5 weeks’ time and hope it all goes well!
31
LIFESTYLE ON DIALYSIS
Ambition 11
People receive all of the information and education necessary to engage fully
in their own care is frequently inadequate and not offered proactively. Encouraging patients to
in the planning and delivery of their dialysis, and are supported to minimise
be involved in their treatment should also promote greater uptake of self-care dialysis, which
the detrimental impact of treatment on their lifestyle and to self-care if they
includes peritoneal dialysis, home haemodialysis and self-care haemodialysis within dialysis
wish.
units. There are clear benefits from self-care dialysis for those that choose it, related to freedom,
Key factors
• Dialysis units proactively and regularly encourage all patients to engage fully in their care
management, provide training in self-care (or elements of self-care) in haemodialysis
units, and offer unrestricted access to home haemodialysis and peritoneal dialysis for
those for whom it is feasible.
• The lifestyle of the patient is considered and discussed alongside clinical needs when
reviewing and planning changes to care management, optimising the ability to meet
commitments such as work, caring for children or other family members and reasonable
travel (including holidays) whilst continuing to dialyse.
lifestyle and control (66). There is evidence that older people may find peritoneal dialysis less
intrusive than haemodialysis despite longer treatment times (67). There are barriers to self-care
including a lack of understanding and fear of social isolation (68) but these can be overcome by
educational interventions (69).
Dialysis for end-stage renal disease (ESRD) is life-saving but also intrusive, demanding and,
unless the patient receives a successful kidney transplant, continues until the end of life. Treatment
therefore has a major impact on patients’ lifestyles and personal ambitions. It is essential that
these lifestyle needs are considered when managing dialysis.
Adherence to treatment is closely linked to the way it is provided. Home dialysis should be an
• Patients are able to attend dialysis sessions in a timely manner either using their own
available option for any patient who is clinically suitable. Patients may wish to exercise this
transport arrangements, with prompt reimbursement of reasonable expenses (which
choice after some time on a different type of treatment. Minimising the impact of dialysis on
must include parking costs), or through a hospital transport service.
lives, enabling patients to continue to work, care for children or other family members, and
• People receiving haemodialysis or training for home therapies who are eligible for hospital transport have access to a transport service that is designed and commissioned as
an integral part of care, and centred on their lifestyle and clinical needs.
Commentary
At the evidence-gathering meeting for this paper (52), many patients raised concerns that
dialysis treatment was being provided with too little involvement of the patient in their care. Whilst
the level of involvement desired by patients will vary, support for the engagement of patients
travel is fundamental. For some patients, psychological support is needed and may help patients
to continue dialysis if they wish to do so.
The lifelong nature of treatment means transport to dialysis sessions in hospital is much more
than a convenience. Patient transport is an essential part of the patient experience. Poor
transport can undermine good dialysis care and have a major impact on patients’ quality of life.
The 2012 Kidney Patient Transport Audit (65) showed that two-thirds of patients who travelled
for haemodialysis did so using hospital transport.
32
around one-third of users reported delays of more than 30 minutes in pick-up times on outward
and return journeys and journey times of over 30 minutes each way, caused by multiple pick-ups
or drop-offs. In some cases, 45 minute journeys could take up to two hours.
Transport must be an integral part of dialysis care and must be organised in a patient-focused
way. Funding for patient transport should be clearly identified and detailed specifications, to
“
My father has transport to take him to and
from dialysis. I would like some time targets
for the timely arrival of transport, to maximise
efficiency for renal units, but more importantly
for quality of life so the least amount of time
is spent hanging around waiting.
which patients have had the chance to contribute, should be included within any transport
contract.
“
“
“
While it indicated improvements in transport arrangements since the previous audit in 2010,
Home haemodialysis has given me my
whole life back, and I love it
33
CARE FOR CHILDREN AND YOUNG PEOPLE WITH KIDNEY DISEASE
Ambition 12
All children and young people with chronic kidney disease have unrestricted
access to a service specifically designed to meet their needs.
Key factors
• Children and young people with kidney disease have access to a paediatric specialist
renal multi-professional team.
Commentary
Kidney disease in children and young people is significantly less common than in adults.
National care in the UK is delivered from 13 paediatric renal centres so many families have a
considerable distance to travel when accessing services at their closest paediatric renal centre.
Whilst children do require distinct specialised care from adults, accessing services for children
separately from those for adults and the long distances involved, represent an additional
significant burden for families.
• Paediatric renal networks support the delivery of care shared between renal unit and
There is emerging evidence that access to a multi-professional team in children and young
local paediatric teams, to enable access to specialist services as close to home as
people supports better clinical outcomes (70). General paediatricians do not usually have all
possible.
the competencies or the team support necessary to manage children and young people with
• All young people with chronic kidney disease are supported by a transition programme,
whether they are already known to paediatric renal services or enter directly into adult
services.
• Paediatric and adult renal services work together and communicate effectively to
ensure that young people’s care is always centred on the patient and their parents
and carers.
• Transition is offered to young people with kidney disease at the age of 11 if
developmentally appropriate, and continues until the young adult is in their
twenties, and is therefore recognised as an important issue for both paediatric and
adult services.
kidney disease locally, but the pathways providing specialist care closer to home that have been
recommended in previous policy documents (71)(72) have not been fully established.
Structured networks of care providers can provide coordinated, high quality care, delivering
as much treatment as possible close to home whilst ensuring the best possible outcome for
the child (73). Developing working relationships between local link paediatricians and visiting
nephrologists improves access to specialist advice and encourages timely referral.
These paediatric renal networks provide the framework to deliver care shared between
specialist and local services, but require investment in network infrastructure to be sustainable (74).
The transition through adolescence can be difficult for all young people, but there are specific
• Transition programmes are delivered by a multi-professional team that includes youth
issues, challenges and needs in young people with a long-term condition or disability (75)(76)
workers, which addresses young people’s medical, psychological, social, learning and
(77). In kidney care, young people who transfer from paediatric to adult services or present
vocational needs, enabling them to become more confident and take control of their
directly to adult services often struggle with adjustment issues and problems with denial and
condition, whilst addressing the needs and concerns of parents and carers.
concordance. The rate of graft loss in adolescents with a renal transplant is high (78) and associated with poor transition into adult services (79).
34
provided to young people with kidney disease. Good transition empowers young people to
take a full part in the management of their kidney condition more effectively in the long term,
and must be seen as an important area by providers of both paediatric and adult renal services.
“
Effective transition must be seen as an integral and routine component of the medical care
“
This was not done when I got to this age
- it is very very important as I felt totally lost.
Transition programmes should be delivered by a multi-professional team that places the young
person at the centre of decision-making and gradually empowers and equips them with the
necessary knowledge and skills (80). The provision of young person friendly care in paediatric and adult services (81), for example through age-appropriate clinics for young people and
the availability of a service directory with information on lifestyle, useful contacts and links to
additional information, can support the most important elements of transition.
“
“
Must also consider the need for support for parents too whilst their child is
in paediatric unit and in transition
35
ALLIED SERVICES
Ambition 13
All people with advanced kidney disease know about and have access to a
specialist multi-professional team.
Next Steps
• All people with advanced kidney disease (normally chronic kidney stages 4 and 5,
• Healthcare professionals working in primary care are educated so that people with less
advanced kidney disease are readily able to access advice on practical (for example
advice with travel insurance), physical (for example diet and exercise) and
psychological issues.
including those that choose conservative care and people with transplants, but also
Commentary
others that need it) are made aware of the benefits of specialist allied health profes-
Specialist allied healthcare professionals play a vital role in advising, treating and supporting
sionals, including dieticians, counsellors, social workers, physiotherapists and pharma-
people with kidney disease to achieve better medical outcomes and quality of life. However,
cists, in improving outcomes and quality of life, and are proactively offered and able to
many people are not informed about the help that these practitioners offer and are frequently
access the full range of services relevant to their needs.
unaware of the psychological and social support services that should be available to them.
• Advice on diet and lifestyle is offered throughout all stages of kidney disease and
support from specialist renal dieticians made freely available for people with more
advanced disease.
• All people with advanced kidney disease have access to timely psychological support,
which is centred on the patient but also offers help to their immediate family or carers.
• All people with end-stage renal disease have access to social support (which may
include support with personal, family, financial, employment and/or social needs)
appropriate to their circumstances.
• All staff providing services to patients from black and minority ethnic backgrounds are
given basic training so that they have an understanding of the cultural and religious
aspects.
• People with kidney disease have prompt access to other specialties where investigation
or treatment is required for a co-existing or complicating condition, for example dermatology in patients taking immunosuppressive medication or cardiology in people
undergoing work-up for transplantation.
Access to allied services is inadequate, inconsistent, and is not always coordinated with other
aspects of kidney care (52).
People with advanced kidney disease need individualised care plans that include guidance on
many lifestyle and medical factors, which can include fluid intake, diet, anaemia management,
treatment of chronic kidney disease (CKD) mineral bone disorder, and assessment for suitability
for transplantation. Expertise in the medical, surgical, nursing, dietetic, pharmacological,
psychological and social issues unique to these patients is essential. This care can only be
provided through a multi-professional team of specialists, rapidly able to shift and coordinate
care as the patient’s needs change. For some of these areas, a proportion of this need is still met
by voluntary organisations; this is not sustainable. (82).
Dialysis patients have particular psychological, social and dietary needs but have variable
access to support from allied services. It is important that the full range of services is provided
by professionals experienced in treating kidney patients. Transplant patients generally receive far
less support, despite the potential value of such advice to maintain their graft and their quality
of life. Allied care for other people with kidney disease who need it tends to be still more limited.
36
Pharmacy support is often not integrated into multi-professional care. If it is included, it may be
and tools needed to support patients in these areas. Exercise therapy, which can improve
provided by pharmacists with no experience in treating kidney patients. This is very important
outcomes and increase quality of life in people with CKD (84), is not adequately promoted to
because kidney patients may require dosage titration of medication due to their impaired
patients at any stage of kidney disease. People who do attend a gym are often turned away
kidney function and are at increased risk of medication-related adverse events. Community
because they have kidney disease (52), and better alliances between renal teams and external
pharmacists, though not expert in treating kidney patients, can make medicines management
agencies are needed to support improved accessibility.
specialist pharmacists to do so (83).
Allied services should be provided in the setting of a patient’s ethnicity, religion and culture. In
particular, the dietary advice to black and minority ethnic group patients should be specific. Staff
should be trained so they are aware, for example, of the differences between Muslim patients
who are from Bangladeshi and Pakistani backgrounds.
People with kidney disease frequently require advice and treatment from other specialties for
conditions that complicate or are otherwise related to their renal conditions. It is a source of
frustration and risk, when patients with advanced renal disease are unable to access these
services directly at the request of their renal specialists, but have to return to their GP to be
“
The community pharmacist pointed out a possible
bad interaction between one of my ...
tablets and another and suggested an urgent
discussion with my kidney specialist. Goodness
knows how this hadn’t been spotted earlier!
“
“
“
safer, but need systems in place so they are aware of a CKD diagnosis and support from
I feel that the encouragement of physical
activity / exercise should form part of the
lifestyle package for dialysis patients.
referred. Examples of this include dermatology reviews in transplant patients, all of whom are at
risk of skin cancer, and cardiology input in people undergoing transplant work-up. Appropriate
local pathways must be designed and agreed so care is more streamlined, efficient and safe.
Although their needs may be different from those with more advanced disease, people at an
earlier stage of CKD are particularly unsupported, with little help available on practical matters
(for example advice with travel insurance), general dietary, lifestyle or psychological issues. Both
patients and non-specialist healthcare professionals need access to the educational resources
37
EXPERT CARE IN RARE KIDNEY DISEASES AND IN PREGNANCY
Ambition 14
Commentary
All people with rare diseases affecting the kidney and women with chronic
Patients with rare kidney disorders and women with kidney disease (particularly more ad-
kidney disease who are contemplating pregnancy have unrestricted access to
vanced disease) are two groups where expert specialist care is required but current provision is
expert advice and care wherever they live and whenever it is needed.
particularly inadequate and inequitable.
Key factors
Both Rare Disease UK and the Department of Health have reported that the care of patients
• All people with rare kidney diseases, which include both inherited disorders and
acquired conditions such as vasculitides have access to early accurate diagnosis including
the latest genetic and biochemical testing and/or imaging, and regular monitoring. All
people with rare kidney diseases have access to expert, coordinated multi-professional
(and often multi-specialty) care, where possible in dedicated clinics, supported by
effective information technology and disorder-specific care plans.
• All people with rare kidney diseases have access to effective drug treatment for their
condition.
with rare diseases (defined by the European Union as a condition affecting fewer than 5 in
10,000 people), including those affecting the kidney, is poorly coordinated, and often beset
by delayed or mis-diagnosis and inequity of access to centres providing expert clinics (85).
The availability of specialist diagnostics (genetic and biochemical), drug treatments and the
opportunity to participate in research is limited and dependent on where patients live. Many
conditions are genetic in origin and most are diagnosed in childhood. Transition from paediatric
to adult care is often uncoordinated and of variable quality, and needs to be improved (76).
Optimal treatment of patients with rare diseases may involve multi-professional care
• The care of all people with rare diseases affecting the kidney includes the submission
delivered by several specialties. Lack of coordination often results in patients not being seen
of data to a Rare Disease Registry (Renal RaDaR), where the person consents, to
by the relevant specialists or unnecessarily attending multiple investigative and/or out-patient
improve understanding and treatment of their disease.
clinics (often more than 30 visits per year). The result may be expensive, poor quality care l
• All people with rare kidney diseases have the opportunity to participate in research
eading to unnecessary illness and end organ damage or failure. The Renal Association and Brit-
irrespective of where they live, to improve the future care of their condition, particularly
ish Association of Paediatric Nephrology ‘Rare Kidney Disease, an Integrated Strategy’ initiative
where there is no current evidence base.
(86) has already led to some improvements. These include the development of national Rare
• All women with chronic kidney disease (including those treated by kidney
Renal Disease Working Groups, high quality patient information, disease registries, and good
transplantation or dialysis) have timely access to expert contraceptive advice and pre-
practice clinical guidelines in a small number of diseases (87), but much remains to be done.
pregnancy counselling.
Patients with very rare kidney diseases will achieve the best outcomes if care for their specific
• All women with chronic kidney disease (including those treated by kidney transplantation
disease is limited to a small number of specialist centres for that disease across the UK. Whilst
or dialysis) have access to expert antenatal care, ideally offered in an experienced
these ‘hubs’ may not be geographically convenient to all patients, the use of intelligent IT and
combined renal/obstetric clinic so as to optimise outcomes for mother and baby.
disorder-specific care plans should enable effective ‘hub-and-spoke’ arrangements, with most
38
are high. A pipeline of drug therapies is being developed. Commissioning coordinated services
and funding of these therapies will allow patients to receive the best and most cost-effective
care.
The UK Renal Registry has revolutionised audit of outcomes for patients with end-stage renal
disease. A greater number of rare renal disease-specific registries covering the entire spectrum
of rare renal disorders would help to deliver coordinated care and monitor outcomes, and engage funding bodies and the pharmaceutical industry in much-needed research and development work. Research and drug development are strongly supported by patient groups, but
both are limited by lack of access to study these patient groups. The Department of Health
recognises the importance that advances in genomic technologies will have on the diagnosis
and treatment of patients with rare diseases (88). We must ensure that patients with rare kidney
disease are at the forefront of this revolution.
Care for women with chronic kidney disease who need advice on family planning or who are
contemplating pregnancy is also very patchy across the UK and often poor. Women with chronic
kidney disease (CKD), including those treated by kidney transplantation (or dialysis), are at increased risk in pregnancy. The evidence base for contraceptive advice for these women is limited
changes in drug treatment, genetic advice where relevant and planning for best antenatal care.
Women with CKD who are pregnant need intensive antenatal monitoring and are best cared for
in established expert joint renal/obstetric clinics with individualised care plans (89). These care
plans should include arrangements for post-natal management.
The evidence base on managing pregnancy in kidney disease is extremely limited and women
should also be given the opportunity to participate in research to improve outcomes for mother
and baby.
“
..Relevant information is not available even
though changes to medications and other precautions
are crucial....having had a transplant at 13 and now
married, this is important to make
an informed decision
“
As no-one recognised that I had kidney
disease the birth of my first child was beset with
distressing complications for me and my daughter.
“
Drug therapies for some rare renal conditions are already available, but often acquisition costs
It also helps with optimisation of the maternal condition for pregnancy, including appropriate
“
care provided by local centres.
and experience indicates that it is rarely given.
However, most women can achieve a successful pregnancy outcome if they (and their partners)
have access to joint decision making in an expert pre-pregnancy counselling clinic, staffed by
both expert renal and obstetric specialists. This allows proper planning for any pregnancy and
informed decision-making on proceeding to pregnancy based on the risks for mother and baby.
39
RESEARCH
Ambition 15
A research strategy for kidney disease is developed, supported by the
Research of all types, quantitative and qualitative, basic, applied and translational, provides the
funding required to design and conduct high quality studies, and used to
foundations upon which advances in healthcare are built. Research, defined as the “generation
further understanding of the mechanisms of disease and improve healthcare
of new knowledge by addressing clearly defined questions with systematic and rigorous
quality and outcomes.
methods” (90) furthers our understanding of disease, allows the development of targeted
Key factors
• Priority areas for research in kidney disease, focused on the needs of kidney patients
and including the full spectrum of renal disorders, are identified.
• Funding is made available from national bodies to support high quality basic science,
applied and translational research into priority areas.
• People with kidney disease are meaningfully involved in the design and conduct of
research studies.
treatments and supports all clinical developments to improve patient care.
However at present, much of renal clinical care lacks good quality evidence upon which to base
practice. Randomised controlled trials are scarce, and we lag well behind other specialties in
the culture of recruitment of patients to clinical studies.
A research strategy should be developed to address the most important deficiencies in our
knowledge, and the culture to deliver this programme developed within all renal units,
supported by centres of excellence. We need high quality research across the entire spectrum
• A culture where participation in research is seen as the norm is developed within all
of renal disorders outlined in this document. In this way we will increase our understanding of
renal units, with centres of excellence developing research networks to encourage
the basic mechanisms of kidney disease and improve clinical care. Better evidence is required
research within local units, boosting recruitment into multi-centre trials.
to reduce cardiovascular risk, inform patients how to self-manage effectively, measure and
• The recognised strengths of the kidney community’s registries and databases are used
improve quality of life, prevent or delay disease progression, prevent, treat acute kidney injury,
to develop the evidence base for conditions where it may not be feasible to conduct
help people choose a treatment for end-stage renal disease, improve access and outcomes in
randomised studies.
transplantation, deliver better dialysis, improve the care of children and young people, and treat
• The results of research studies are used to identify targets for quality improvement
so that research findings are consistently implemented in routine clinical practice,
providing better system performance and outcomes for people with kidney disease.
• The role of improvement science in determining which quality improvement strategies
are effective within complex healthcare systems is widely recognised and supported
through well-designed and evaluated improvement studies.
and support people with rare kidney disorders.
Within these, and other areas of research interest in kidney disease, are important questions of
immediate relevance to all five domains of the 2013/2014 NHS Outcomes Framework, which
sets out the high-level outcomes that the NHS should be aiming to improve (91). This policy
imperative is further supported by a well-developed Kidney Research Consortium (92), a history of meaningful patient involvement in research, a fully integrated team of allied healthcare
professionals who care for people with kidney disease, and highly developed registries to
Commentary
40
provide evidence for conditions and situations where randomised controlled trials are not
feasible. Together this should allow the design of high quality studies that will attract the
funding that must be made available to support research in this country.
A sound evidence base is necessary but not sufficient to deliver the best and most cost-effective
care to patients. Uptake of research findings into routine clinical practice is also required. The
results of research studies should be used where appropriate to identify targets for quality
improvement and to close the gap between what is known and what is practised. Quality
improvement itself should be supported by the widespread application of improvement science
to research effective techniques, strategies and theories that can then be used widely by many
teams in different settings to undertake quality improvement well (93).
“
“
Research into transition has now taken off,
however more needs to be done to see that there
is a universal transition framework / guideline for
youngsters coping with CKD.
“
My diabetes was diagnosed four years after my
transplant and I am pleased to see that research
has shown a link. This will help new patients to look
more carefully at pros and cons when
making decisions about their treatment.
“
41
CONSERVATIVE CARE
Ambition 16
All people who opt for conservative non-dialytic management of their kidney
situations, treatments can extend life at the cost of quality (95). Renal conservative care involves
disease or choose to discontinue dialysis treatment are supported by a
withdrawing or not embarking on dialysis, whilst carefully and proactively providing all relevant
multi-professional team working closely together to ensure a smooth
treatments including medication, symptom control and psychological support to ensure the best
transition to palliative and end of life care.
quality of life and death possible.
Key factors
All patients should be given the information necessary to make a choice regarding dialysis.
• Patients and their families or carers are given sufficient information, time and support,
to make decisions about non-dialytic and end of life care, which includes, at the
appropriate time, discussion about the preferred place of care and place of death.
• All professionals treating patients with advanced kidney disease are trained to initiate
and manage discussions with patients and their carers about non-dialytic and end of
life care.
• Conservative care is provided by a multi-professional team, including renal and
palliative specialists, general practitioners, community nurses, counsellors and social
care agencies, who have the required skills and experience and communicate effectively.
• Patients receiving conservative treatment and their families or carers, remain at the
centre of care with patients being offered palliative input and symptom management
continuously tailored to their needs as they approach end of life, to allow the best
possible death.
Discussing death is never easy for a patient, their family or the clinician, and the healthcare
professionals involved need the appropriate training to handle these conversations with skill
and sensitivity.
Intensive input from a skilled multi-professional team is as important for conservative care as it
is for dialysis treatment or transplantation. Planning alone is insufficient unless the elements of
a support network for each patient are put in place. Specialists, including counsellors with renal
and palliative expertise, general practitioners and community nurses are all required to provide
a patient-focused service, supported by input from social care agencies.
The needs of patients and their families or carers receiving supportive care will change over
time. The transition to, but also the maintenance of, high quality conservative care requires flexibility and good communication between all involved parties to ensure that it is smooth. Renal
services must have the links and resources in place to keep people who choose non-dialytic
treatment or withdraw from dialysis comfortable and provide care right up to their death.
Commentary
Dialysis saves lives. However, dialysis in people with multiple co-morbidities may prolong life for
only a limited period and reduce quality of life considerably (94). The concept of a “good life
and a good death” should form the basis all renal conservative management. People struggling
with the burden of disease face a balance between prolongation and quality of life. In such
42
“
“
Quality of life should be a key
ambition for everyone involved in the treatment of
kidney disease and this should include the choice of
the kind of care you receive if you become so ill you
have literally “had enough”
“
“
Multi professional teams include the patients.
43
APPENDIX 1 : HOW THIS REPORT WAS PRODUCED.
Kidney Health was an initiative of the Kidney Alliance, which included the following organisations: Association of Renal Managers, British Kidney Patient Association, British Renal Society,
Kidney Research UK, National Kidney Federation, Renal Association, Renal Nutrition Group, and
the Royal College of Nursing (Nephrology Forum).
The Kidney Health team was assembled in October 2012 to provide advice, guidance and support to the authors of the report. Its membership was drawn from the patient and professional
organisations that made up the Kidney Alliance.
consultation. 75% of the respondents to the consultation were people with kidney disease.
Further comments on the draft were received at a stakeholder feedback meeting held on 19th
September 2013 (at Portcullis House, Westminster, London) attended by representatives from
the main patient and professional groups.
Comments from the consultation and stakeholder feedback meeting were incorporated into the
final document, which was then subjected to a plain English test.
The quotations used in the document were taken from a number of the sources described above.
The paper was co-authored on behalf of the Kidney Health team by Fiona Loud, Policy Director
The authors gathered evidence and expert comments from a wide variety of sources, spanning
of the British Kidney Patient Association and former Director of the Kidney Alliance, and Dr Hugh
the entire kidney care pathway. The sources included people with kidney disease, healthcare
Gallagher, Consultant Nephrologist, Epsom and St Helier NHS Trust.
professionals from primary care, specialist renal practitioners (medical, surgical, nursing and
allied healthcare professionals) and commissioners.
Evidence was obtained in a number of different ways:
•AcriticalreviewoftheRenalNationalServiceFramework(Parts1and2).
•Originaldeskresearchconductedbytheauthors,orundertheirsupervision.
•Writtencontributionsfromanumberofpatientandprofessionalbodiesinrenalmedicine
including the British Association of Paediatric Nephrology, British Kidney Patient Association,
British Renal Society, British Transplant Society, Kidney Research UK, National Kidney Federation,
Renal Association, and the Renal Nutrition Group.
•Anevidencegatheringdayheldon18thJune2013(attheImperialHotel,RussellSquare,
London) and attended by over 40 medical professionals, commissioners and patients.
•Subsequentwrittensubmissionsreceivedfromattendeesattheevidencegatheringday.
•Individualinterviewswithexpertsinspecificaspectsofkidneycare.
The evidence was used to create a draft report, which was the subject of a three-week on-line
44
APPENDIX 2 : ACKNOWLEDGEMENTS
The Kidney Health report was developed by patients and professionals working together
The Kidney Health team is very grateful to the many people who have contributed towards this
throughout.
document as an individual or through their organisations, including:
The Kidney Health team are:
Lisa Burnapp, Phil Carlick, Ron Cullen, Glyn Davies MP, Professor Azhar Farooqi, Dr Richard
Dr Abraham Abraham, Alan Craig, Dr. Hugh Gallagher, Andrew Greaves, Fiona Loud, Jane
Fluck, Dr Roger Greenwood, Dr Kathryn Griffith, Elaine Hanson, Jane Hattersley, Jonathon
Macdonald, Michael Nation, Tracey Rose, Marcelle de Sousa, Carli Wall, Louise Wells.
Hope, Professor Fiona Karet Frankl, Dr Graham Lipkin, Dr Iain MacPhee, Lorna Marson, Dr
The Kidney Health team would like to acknowledge the help and support of the following
Christian Martin, Baroness Masham of Ilton, Dr Emma Murphy, Dr Arvind Negra, Professor
organisations during the preparation of this report:
James Neuberger, Nick Palmer, Dr Paul Stevens, Dr Rebecca Suckling, Dr Charlie Thomson,
Association of Renal Managers
Dr E Jane Tizard.
British Association for Paediatric Nephrology
The Kidney Health team would also like to thank:
British Kidney Patient Association
All the attendees at the evidence gathering day, 18th June 2013
British Renal Society
All the respondents to the Kidney Health consultation, September 2013
British Transplantation Society
All the attendees at the stakeholder feedback meeting, 19th September 2013
Diabetes UK
NHS Blood and Transplant
Kidney Research UK
National Kidney Federation
The team would particularly like to acknowledge the contribution of Andrew Greaves.
The team are grateful for editing support from Carli Wall, Shahid Muhammad, Helen Lore, and
Celia Heley.
Renal Association
The following organisations have supported this independent report with unconditional grants:
Renal Nutrition Group
Baxter Healthcare, Fresenius Medical Care Renal Services, Takeda UK Ltd, Shire Pharmaceuticals.
Royal College of General Practitioners
Royal College of Nursing Nephrology Forum
UK Renal Registry
45
APPENDIX 3 : GLOSSARY & ABBREVIATIONS
Acute kidney injury A rapid loss of kidney function. It has
many causes and often occurs as a complication of other conditions (e.g. infection and dehydration). People with pre-existing
chronic kidney disease are particularly susceptible.
Albumin: creatinine ratio A urine test to determine
whether albuminuria is present.
Albuminuria The presence of albumin (protein) in the urine.
It is a sign of damage to the kidney and helps determine the
stage of chronic kidney disease.
Allied Services Healthcare services distinct from medicine and nursing. Allied healthcare professionals have a very
important role in caring for people with kidney disease.
Assisted peritoneal dialysis Where people receive help
to perform peritoneal dialysis at home, from either a healthcare
worker or carer.
Chronic kidney disease Loss of kidney function (measured
using the estimated glomerular filtration rate) or damage to
the kidney (usually albuminuria, but there can be other signs
such as an abnormal appearance of the kidneys on scanning)
that is sustained over time. In a minority of people it is progressive and leads to end-stage renal disease.
Conservative care Full supportive treatment for those with
advanced kidney failure who decide against starting dialysis or
choose to discontinue dialysis.
Donation after brainstem death The retrieval of organs
for transplantation from a person in whom the heart is still
active but after death has been confirmed using tests of brain
activity.
End-stage renal disease The stage in kidney disease when
a person’s kidneys fail and dialysis treatment or a transplant is
required to sustain life.
Estimated glomerular filtration rate A measure of how
well the kidneys are cleaning the blood. It is calculated from
a blood test and helps determine the stage of chronic kidney
disease.
Graft A transplanted organ.
Haemodialysis A treatment for kidney failure in which the
blood is cleaned outside the body by a machine that passes the
blood across a filter.
Home haemodialysis Where people have haemodialysis
treatment at home. Special plumbing usually needs to be
installed in the house, although portable machines have also
been developed.
Quality and Outcomes Framework A voluntary incentive scheme for GP practices, rewarding them for how well they
care for patients. Chronic kidney disease was included in the
QOF in 2006.
Renal replacement therapy Life supporting treatments
for kidney failure, encompassing all forms of dialysis and also
kidney transplantation.
Self-care dialysis Where people perform their own dialysis
treatment, or some aspects of it. It includes peritoneal dialysis,
self-care haemodialysis, and home haemodialysis.
Self-care haemodialysis Where people carry out some or
all of their own dialysis treatment in a dialysis unit.
Transition programme A programme for making all the
changes that need to take place as a young person moves from
children’s services into the adult world and adult services.
Information Governance Set of standards that the NHS
follows to make sure that full and accurate records of care are
kept and handled securely and confidentially.
Silo management Where different conditions that a person
has (e.g. chronic kidney disease, diabetes and cardiovascular
disease) are treated separately rather than together.
Intercurrent illness Illness occurring during the course of
another disease (e.g. a person with chronic kidney disease developing a chest infection).
Vascular access A method of establishing a point of entry
to the bloodstream so that haemodialysis can be performed.
Multi-professional team A group of people from different professions and agencies who work together to meet the
needs of patients.
Vasculitides A group of disorders where the underlying cause
is inflammation of a blood vessel. They are an uncommon but
serious cause of kidney disease.
Peritoneal dialysis A treatment for kidney failure which
uses the body’s natural membrane in the abdominal cavity to
clean the blood.
Pre-emptive (kidney) transplant A kidney transplant
which is performed before the need for dialysis. It offers many
advantages to those who are medically suitable.
46
AKI
Acute kidney injury
CKD
Chronic kidney disease
DBD
Donation after brainstem death
ESRD
End-stage renal disease
eGFR
Estimated glomerular filtration rate
HD
Haemodialysis
NHSBT
NHS Blood and Transplant
MRSA
Methicillin-resistant staphylococcus aureus
NICE
National Institute for Health and Care Excellence
PD
Peritoneal dialysis
QOL
Quality of life
RRT
Renal replacement therapy
47
APPENDIX 4 : REFERENCES
The National Service Framework for Renal Services was published by the Department of Health in two parts in 2004 and 2005:
Part 1: Dialysis and Transplantation
(https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/199001/National_Service_Framework_for_Renal_Services_Part_One_-_Dialysis_and_Transplantation.pdf)
Part 2: Chronic Kidney Disease, Acute Renal Failure and End of Life Care
(https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/199002/National_Service_Framework_for_Renal_Services_Part_Two_-_Chronic_Kidney_Disease_Acute_Renal_Failure_and_End_of_Life_
Care.pdf
1.Jain, N. 2008. Kidney Research UK’s: a better life through education and empowerment. Br.J.Community Nurs., 13, (4) 166-170
2.Shankar, B., Brambila-Macias, J., Traill, B., Mazzocchi, M., & Capacci, S. 2013. An evaluation of the UK Food Standards Agency’s salt campaign. Health Econ., 22, (2) 243-250
3.Department of Health 2000. The National Services Framework for Coronary Heart Disease (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/198931/National_Service_Framework_for_Coronary_
Heart_Disease.pdf)
4.Drey, N., Roderick, P., Mullee, M., & Rogerson, M. 2003. A population-based study of the incidence and outcomes of diagnosed chronic kidney disease. Am.J.Kidney Dis., 42, (4) 677-684
5.Judge, A., Caskey, F.J., Welton, N.J., Ansell, D., Tomson, C.R., Roderick, P.J., & Ben-Shlomo, Y. 2012. Inequalities in rates of renal replacement therapy in England: does it matter who you are or where you live? Nephrol.Dial.Transplant.,
27, (4) 1598-1607
6.Ejerblad, E., Fored, C.M., Lindblad, P., Fryzek, J., McLaughlin, J.K., & Nyren, O. 2006. Obesity and risk for chronic renal failure. J.Am.Soc.Nephrol., 17, (6) 1695-1702
7.Matsushita, K., van, d., V, Astor, B.C., Woodward, M., Levey, A.S., de Jong, P.E., Coresh, J., & Gansevoort, R.T. 2010. Association of estimated glomerular filtration rate and albuminuria with all-cause and cardiovascular mortality in
general population cohorts: a collaborative meta-analysis. Lancet, 375, (9731) 2073-2081
8.Gansevoort, R.T., Matsushita, K., van, d., V, Astor, B.C., Woodward, M., Levey, A.S., de Jong, P.E., & Coresh, J. 2011. Lower estimated GFR and higher albuminuria are associated with adverse kidney outcomes. A collaborative metaanalysis of general and high-risk population cohorts. Kidney Int., 80, (1) 93-104
9.Department of Health 2013. Cardiovascular Disease Outcomes Strategy. Improving outcomes for People with or at Risk of Cardiovascular Disease, Dept. of Health (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/217118/9387-2900853-CVD-Outcomes_web1.pdf)
10.National Institute for Health and Care Excellence 2011. Quality Standard for chronic kidney disease
(http://publications.nice.org.uk/chronic-kidney-disease-quality-standard-qs5)
11.Health and Social Care Information Centre 2012. Quality of Outcomes Framework achievement data 2011/12
(http://www.qof.ic.nhs.uk/)
12.Stevens, P.E., O’Donoghue, D. , de Lusignan, S., Van Vlymen, J., Klebe, B., Middleton, R., Hague, N., New, J., & Farmer, C.K. 2007. Chronic kidney disease management in the United Kingdom: NEOERICA project results. Kidney Int.,
72, (1) 92-99
13.de Lusignan, S., Tomson, C.R., Harris, K., Van Vlymen, J., & Gallagher, H. 2012. UK prevalence of chronic kidney disease for the adult population is 6.76% based on two creatinine readings. Nephron Clin. Pract., 120, c107
14.Health and Social Care Information Centre 2009. Health Survey for England, Volume 1: Health and Lifestyles
(https://catalogue.ic.nhs.uk/publications/public-health/surveys/heal-surv-heal-life-eng-2009/heal-surv-heal-life-eng-2009-rep-v2.pdf)
15.Census 2011: Population Estimates for the United Kingdom
(http://www.ons.gov.uk/ons/dcp171778_292378.pdf)
16.Crinson, I., Gallagher, H., Thomas, N., & de Lusignan, S. 2010. How ready is general practice to improve quality in chronic kidney disease? A diagnostic analysis. Br.J.Gen.Pract., 60, (575) 403-409
17.National Institute for Health and Care Excellence 2013. Acute kidney injury: Prevention, detection and management of acute kidney injury up to the point of renal replacement therapy (http://publications.nice.org.uk/acute-kidneyinjury-cg169)
48
18.Moynihan, R., Glassock, R., & Doust, J. 2013. Chronic kidney disease controversy: how expanding definitions are unnecessarily labelling many people as diseased 2013. BMJ, 347, f4298
19.Coresh, J., Levey, A.S., Levin, A., & Stevens, P. 2013. A stable definition of chronic kidney disease improves knowledge and patient care. BMJ 347/bmj.f5553
20.Department of Health 2008. Vascular Checks: risk assessment and management: ‘Next Steps’ Guidance for Primary Care Trusts (http://www.healthcheck.nhs.uk/document.php?o=226)
21.Diabetes UK 2012. Prevention and Early Diagnosis of Type 2 Diabetes: The NHS Health Check Programme
(http://www.diabetes.org.uk/Documents/Reports/nhs-health-check-lets-get-it-right-0912.pdf)
22.Health and Social Care Information Centre 2012. The National Diabetes Audit 2010/11 Report 1: Care Processes and Treatment Targets
(http://www.hscic.gov.uk/nda)
23.McIntyre, N.J., Fluck, R., McIntyre, C., & Taal, M. 2012. Treatment needs and diagnosis awareness in primary care patients with chronic kidney disease. Br.J.Gen.Pract., 62, (597) e227-e232
24.Kidney Research UK 2012. An Information booklet to help you look after your kidneys, (http://issuu.com/kidney_research_uk/docs/information_booklet?e=1357821/2427061)
25.National Kidney Federation (NKF)
(http://www.kidney.org.uk/help/)
26.British Kidney Patients Association (BKPA)
(http://www.britishkidney-pa.co.uk/patient-info)
27.Palmer, S., Vecchio, M., Craig, J.C., Tonelli, M., Johnson, D.W., Nicolucci, A., Pellegrini, F., Saglimbene, V., Logroscino, G., Fishbane, S., & Strippoli, G.F. 2013. Prevalence of depression in chronic kidney disease: systematic review and
meta-analysis of observational studies. Kidney Int., 84, (1) 179-191
28.Wyld, M., Morton, R.L., Hayen, A., Howard, K., & Webster, A.C. 2012. A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments. PLoS.Med., 9, (9) e1001307
29.Mapes, D.L., Lopes, A.A., Satayathum, S., McCullough, K.P., Goodkin, D.A., Locatelli, F., Fukuhara, S., Young, E.W., Kurokawa, K., Saito, A., Bommer, J., Wolfe, R.A., Held, P.J., & Port, F.K. 2003. Health-related quality of life as a
predictor of mortality and hospitalization: the Dialysis Outcomes and Practice Patterns Study (DOPPS). Kidney Int., 64, (1) 339-349
30.Abdel-Kader, K., Unruh, M.L., & Weisbord, S.D. 2009. Symptom burden, depression, and quality of life in chronic and end-stage kidney disease. Clin.J.Am.Soc.Nephrol., 4, (6) 1057-1064
31.Fitzpatrick, R., Davey, C., Buxton, M.J., & Jones, D.R. 1998. Evaluating patient-based outcome measures for use in clinical trials. Health Technol.Assess., 2, (14) i-74
32.Renal Patient View (RPV)
(https://www.renalpatientview.org/)
33.National Confidential Enquiry into Patient Outcome and Death (NCEPOD) 2009. Acute Kidney Injury: Adding Insult to Injury (http://www.ncepod.org.uk/2009report1/Downloads/AKI_report.pdf)
34.Kerr, M., Bedford, M., O’Donoghue, D., Metcalf, J., Matthews, B. 2012. The economic impact of acute kidney injury. J. Royal Coll. Physicians Edinb., 42, (Suppl 19), 27
(http://www.rcpe.ac.uk/sites/default/files/files/rcpe-aki-supplement-2012.pdf)
35.National Institute for Health and Care Excellence 2013. Feature: Could preventing acute kidney injury hold the key to cutting the number of avoidable deaths on the NHS? (http://www.nice.org.uk/newsroom/features/CouldPreventingAcuteKidneyInjuryHoldTheKeyToCuttingTheNumberOfAvoidableDeathsOnTheNHS.jsp)
36.Levey, A.S., de Jong, P.E., Coresh, J., El, N.M., Astor, B.C., Matsushita, K., Gansevoort, R.T., Kasiske, B.L., & Eckardt, K.U. 2011. The definition, classification, and prognosis of chronic kidney disease: a KDIGO Controversies Conference report. Kidney Int., 80, (1) 17-28
37.Renal Association 2012. The UK Renal Registry 15th Annual Report (http://www.renalreg.com/Reports/2012.html)
38.National Institute for Health and Care Excellence 2011. Peritoneal Dialysis in the treatment of stage 5 chronic kidney disease (http://www.nice.org.uk/nicemedia/live/13524/55517/55517.pdf)
39.Fluck, R., Pilcher, D. and Steenkamp, R. 2012. Vascular Access Report. UK Renal Registry and NHS Kidney Care
(http://www.renalreg.com/Reports/2012.html)
40.Ravanan, R., Udayaraj, U., Ansell, D., Collett, D., Johnson, R., O’Neill, J., Tomson, C.R., & Dudley, C.R. 2010. Variation between centres in access to renal transplantation in UK: longitudinal cohort study. BMJ, 341, c3451
41.NHS Blood and Transplant 2013. Organ donation statistics (http://www.organdonation.nhs.uk/statistics/)
42.Renal Association 2011. Assessment of the Potential Kidney Transplant Recipient (http://www.renal.org/Clinical/GuidelinesSection/AssessmentforRenalTransplantation.aspx)
43.Udayaraj, U., Ben-Shlomo, Y., Roderick, P., Casula, A., Dudley, C., Johnson, R., Collett, D., Ansell, D., Tomson, C., & Caskey, F. 2010. Social deprivation, ethnicity, and access to the deceased donor kidney transplant waiting list in
England and Wales. Transplantation, 90, (3) 279-285
44.Udayaraj, U., Ben-Shlomo, Y., Roderick, P., Casula, A., Dudley, C., Collett, D., Ansell, D., Tomson, C., & Caskey, F. 2012. Social deprivation, ethnicity, and uptake of living kidney donor transplantation in the United Kingdom. Transplantation, 93, (6) 610-616
49
45.Rudge, C., Johnson, R.J., Fuggle, S.V., & Forsythe, J.L. 2007. Renal transplantation in the United Kingdom for patients from ethnic minorities. Transplantation, 83, (9) 1169-1173
46.Access to Transplant and Transplant Outcome Measures (ATTOM) (https://www.attom.org/default.aspx)
47.Knoll, G.A. 2009. Is kidney transplantation for everyone? The example of the older dialysis patient. Clin.J.Am.Soc.Nephrol., 4, (12) 2040-2044
48.Wolfe, R.A., Ashby, V.B., Milford, E.L., Ojo, A.O., Ettenger, R.E., Agodoa, L.Y., Held, P.J., & Port, F.K. 1999. Comparison of mortality in all patients on dialysis, patients on dialysis awaiting transplantation, and recipients of a first
cadaveric transplant. N.Engl.J.Med., 341, (23) 1725-1730
49.Kasiske, B.L., Snyder, J.J., Matas, A.J., Ellison, M.D., Gill, J.S., & Kausz, A.T. 2002. Preemptive kidney transplantation: the advantage and the advantaged. J.Am.Soc.Nephrol., 13, (5) 1358-1364
50.Department of Health 2008. Organ for Transplants: A Report from the Organ Donation Taskforce
(http://www.bts.org.uk/Documents/Publications/Organs%20for%20transplants%20-%20The%20Organ%20Donor%20Task%20Force%201st%20report.pdf)
51.British Renal Society Conference 2013. Poster programme (http://www.britishrenal.org/Conferences/Conferences-Home/BRS-Conference-2013/2013-Poster-Programme.aspx)
52.Kidney Health evidence gathering meeting held in London on 18th June 2013
53.NHS England 2013. Commissioning Policy Statement: Reimbursement Of Expenses For Living Kidney Donors
(http://www.england.nhs.uk/wp-content/uploads/2013/04/a07-ps-a.pdf)
54.National Black, Asian and Minority Ethnic (BAME) Transplant Alliance (NBTA) (http://www.nbta-uk.org.uk/)
55.NHS Blood and Transplant 2013. Taking Organ Transplantation to 2020 (http://www.nhsbt.nhs.uk/to2020/resources/nhsbt_organ_donor_strategy_long.pdf)
56.National Institute for Health and Care Excellence 2013. Organ donation for transplantation: Improving donor identification and consent rates for deceased organ donation
(http://publications.nice.org.uk/organ-donation-for-transplantation-improving-donor-identification-and-consent-rates-for-deceased-cg135)
57.Verbal evidence given at NHS Annual Organ Donation Congress on 4th September 2013
58.NHS Blood and Transplant 2013. National Standards for Organ Retrieval from Deceased Donors.
(http://www.bts.org.uk/Documents/9.1.13%20Retrieval%20Standards%20Document%20v2%206%20effective%20010113.pdf)
59.Szeifert, L., Molnar, M.Z., Ambrus, C., Koczy, A.B., Kovacs, A.Z., Vamos, E.P., Keszei, A., Mucsi, I., & Novak, M. 2010. Symptoms of depression in kidney transplant recipients: a cross-sectional study. Am.J.Kidney Dis., 55, (1) 132-140
60.Renal Association 2011. Post-Operative Care of the Kidney Transplant Recipient (http://www.renal.org/clinical/guidelinessection/Post-operative-Care-Kidney-Transplant-Recipient.aspx)
61.KDIGO Care of the Kidney Transplant Recipient
(http://kdigo.org/home/guidelines/care-of-the-kidney-transplant-recipient/)
62.The Renal Association. How do the KDIGO Clinical Practice Guidelines on the Care of Kidney Transplant Recipients apply to the UK? (http://www.renal.org/Libraries/Other_Guidlines/Implementation_of_the_KDIGO_guideline_on_
the_management_of_the_kidney_transplant_recipient_in_the_UK_2010.sflb.ashx)
63.The Renal Association 2009. Haemodialysis
(http://www.renal.org/Clinical/GuidelinesSection/Haemodialysis.aspx)
64.The Renal Association 2010. Peritoneal Dialysis
(http://www.renal.org/Clinical/GuidelinesSection/PeritonealDialysis.aspx)
65.NHS Kidney Care 2012. Patient Transport Audit (http://www.kidneycarematters.nhs.uk/i/assets/Kidney%20Patient%20Transport%20Audit%202012%20-%20Web%20Version.pdf)
66.McLaughlin, K., Jones, H., VanderStraeten, C., Mills, C., Visser, M., Taub, K., & Manns, B. 2008. Why do patients choose self-care dialysis? Nephrol.Dial.Transplant., 23, (12) 3972-3976
67.Brown, E.A., Johansson, L., Farrington, K., Gallagher, H., Sensky, T., Gordon, F., Da Silva-Gane, M., Beckett, N., & Hickson, M. 2010. Broadening Options for Long-term Dialysis in the Elderly (BOLDE): differences in quality of life on
peritoneal dialysis compared to haemodialysis for older patients. Nephrol.Dial.Transplant., 25, (11) 3755-3763
68.McLaughlin, K., Manns, B., Mortis, G., Hons, R., & Taub, K. 2003. Why patients with ESRD do not select self-care dialysis as a treatment option. Am.J.Kidney Dis., 41, (2) 380-385
69.Manns, B.J., Taub, K., VanderStraeten, C., Jones, H., Mills, C., Visser, M., & McLaughlin, K. 2005. The impact of education on chronic kidney disease patients’ plans to initiate dialysis with self-care dialysis: a randomized trial. Kidney
Int., 68, (4) 1777-1783
70.Ajarmeh, S., Er, L., Brin, G., Djurdjev, O., & Dionne, J.M. 2012. The effect of a multidisciplinary care clinic on the outcomes in pediatric chronic kidney disease. Pediatr.Nephrol., 27, (10) 1921-1927
71.Department of Health 2008. Commissioning Safe and Sustainable Specialised Paediatric Services. A Framework of Critical Inter-Dependencies (https://www.bspar.org.uk/DocStore/FileLibrary/PDFs/Commissioning%20Safe%20
and%20Sustainable%20Specialised%20Paediatric%20Services.pdf)
50
72.Department of Health 2006. The National Services Framework for Renal Services. Working for Children and Young People (http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/
groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4136542.pdf)
73.Royal College of Paediatrics and Child Health, British Association for Paediatric Nephrology and NHS Kidney Care 2011. Improving the standard of care of children and young people with kidney disease through paediatric nephrology networks (http://www.bapn.org/assets/clinical_standards/20110831%20care%20of%20children%20for%20publication.pdf)
74.Christian, M.T. 2013. Children and young people’s kidney network for the East Midlands, East of England and South Yorkshire. Report of a 5-month secondment from November 2012 to March 2013
(https://www.nuh.nhs.uk/our-services/nottingham-children%27s-hospital/our-services/children%27s-renal-and-urology-network/)
75.Department of Health 2006. Transition: getting it right for young people. Improving the transition of young people with long term conditions from children’s to adult health services, (https://www.bspar.org.uk/DocStore/FileLibrary/
PDFs/Transition-%20getting%20it%20right%20for%20young%20people%20-%2023rd%20March%202006.pdf)
76.Royal College of Paediatrics and Child Health 2003. Bridging the gap: health care for adolescents
(http://www.rcpch.ac.uk/system/files/protected/page/bridging_the_gaps.pdf)
77.Department of Health 2008. Transition: Moving on Well. A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability (http://webarchive.
nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_083593.pdf)
78.Watson, A.R. 2000. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr.Nephrol., 14, (6) 469-472
79.Harden, P.N., Walsh, G., Bandler, N., Bradley, S., Lonsdale, D., Taylor, J., & Marks, S.D. 2012. Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ, 344, e3718
80.The British Association of Paediatric Nephrology and Renal Association 2009. Helping Adolescents and Young Adults with End-Stage Renal Disease (http://www.bapn.org/assets/clinical_standards/BAPN%20RA%20transition%20
document.pdf)
81.Department of Health 2011. You’re Welcome. Quality criteria for young people friendly health services
(https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216350/dh_127632.pdf)
82.The British Kidney Patients Association (BKPA) Commitments 2013. (http://www.britishkidney-pa.co.uk/images/stories/downloads/BKPA_Commitments.pdf)
83.Royal Pharmaceutical Society 2013. What is a Medicines Use Review? (http://www.rpharms.com/health-campaigns/medicines-use-review.asp)
84.Heiwe, S. & Jacobson, S.H. 2011. Exercise training for adults with chronic kidney disease. Cochrane.Database.Syst.Rev. (10) CD003236
85.Rare Disease UK 2011. Improving Lives Optimising Resources: A Vision for the UK Rare Disease Strategy
(http://www.raredisease.org.uk/documents/RD-UK-Strategy-Report.pdf)
86.The Renal Association and British Association for Paediatric Nephrology 2010. Rare Kidney Diseases: An Integrated Strategy for Patients in the UK (http://www.bapn.org/assets/clinical_standards/BAPN%20RA%20transition%20
document.pdf)
87.Rare Renal.org: Information on rare kidney diseases
(http://rarerenal.org/)
88.The Human Genomics Strategy Group 2012. Building on our Inheritance, Genomic Technology in Healthcare (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213705/dh_132382.pdf)
89.Renal Disease in Pregnancy
(http://www.rcog.org.uk/womens-health/clinical-guidance/renal-disease-pregnancy)
90.Department of Health 2005. Research Governance and Framework for Health and Social Care, Second Edition (http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4108962)
91.Department of Health 2012. The NHS Outcomes Framework 2013/14 (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213055/121109-NHS-Outcomes-Framework-2013-14.pdf).
92.The UK Kidney Research Consortium (UKKRC) (http://www.renal.org/whatwedo/JointActivitiesSection/UKKRC.aspx)
93.The Health Foundation Inspiring Improvement
(http://www.health.org.uk/areas-of-work/improvement-science/)
94.Carson, R.C., Juszczak, M., Davenport, A., Burns, A.l. 2009. Is maximum conservative management an equivalent treatment option to dialysis in elderly patients with significant comorbid disease? Clin. J. Am. Soc. Nephrol. 4,
1611–19
95.Tamura, M.K., Covinsky, K.E., Chertow, G.M., Yaffe, K., Landefeld, C.S, & McCullough, C.E. 2009. Functional status of elderly adults before and after initiation of dialysis. N. Engl. J. Med., 361, 1539-45
51
Kidney Health : Delivering Excellence
The Kidney Health Advisory Group, 2013
Enquiries to the authors via [email protected] or through the organisations below
British Association of Paediatric Nephrologists www.bapn.org.uk
British Kidney Patient Association www.britishkidney-pa.co.uk
British Renal Society www.britishrenal.org
British Transplant Society www.bts.org.uk
Kidney Research UK www.kidneyresearchuk.org
National Kidney Federation www.kidney.org
Renal Association www.renal.org